CPAP - new user.....

[Violet_Beauregard]

OK, about 3 months ago I was diagnosed with a mild case of sleep apnea. I have RELUCTANTLY (to say the least) accepted this. On Friday I received my CPAP and mask (nasal pillows) and used them for the first time last night.

I'm not impressed. I felt no different this morning than any other. I also know I woke several times last night. I'm sure I was getting used to the mask and tube, blowing, etc. but I expected to feel at least a LITTLE better.

My boss uses a CPAP and he claimed he felt 100% better the following morning. I also saw an episode of The View where Rosie O'Donnell now uses a CPAP and she felt better the first day as well.

I didn't expect perfection, but geez....for all the grief I thought it would be different. I'm not jazzed in the least about using this thing, but if I have to I will. I know it will take some time to get into a regular routine, and I expect it will get better, but everything I've heard has been instantaneous results.

Anyone else use a CPAP? What were your results after once use? What can I expect after regular use?

Thanks!!! :)

[imfree]

I've been using a BIPAP for almost 3 years. It took me 3 days to
adapt to it. I knew and accepted that my body needed it for my survival. I
went from "falling asleep at the wheel" and near-heart attack low levels of oxygen saturation to feeling more alive at 51 than at 30! It takes awhile for
your saturation to recover. I URGE you to email my doctor. Obesity is not a death-sentance if you pro-actively take charge of your life and health. I fully intend to weigh 400lbs, when I die, at the age of 80,after out-living all the doctors who told me to lose weight, So help me GOD! I'm RESOLUTE and not afraid!!! I say what I say, in love, to protect you. Stop being a victim of fat-
hatred and be a victor over it, you can win, girl!!!
The Reckless Driver
Who'll Win The Race,
Edgar

[Zandoz]

Going on 10 year CPAP/BiPAP user here. Three "from personal experiance" things come to mind...


The headgear & nasal pillows are not fitting properly, and therefore not working as intended.
There is one or more issues in addition to the apnea, detracting from your sleep quality. Example: Bad mattress.
You are inadvertently mouth breathing, which will totally defeat the function of the CPAP.

[Happy FA]

I've been using CPAP for more than 11 years and I DID have the first day epiphany of a real change. However, it's not unusual that people find that there changes are much more modest in the short term and it takes a period of days, weeks or even a month or two until they get the full benefits of the CPAP. I've never met anyone who faithfully used it and made sure that they got a mask or nasal pillows that really fit(when you're lying down in bed the way you're actually going to sleep-rather than sitting up and checking things out) who didn't realize that the change in their quality of life and quality of sleep was not profound.

There are a variety of factors which can contribute to the quality of the experience. One is the type, size and adjustment of the headgear so your mask or nasal pillows fit well. Surprisingly, most people tighten the straps too much and this makes for a poorer fit.

I'd be happy to give you tips or advice about the use of the machine, but the three most important bits of advice would be:

1. Use the machine whenever you're going to sleep, whether at night or for a nap.(and if you're going to travel, take it along with you).

2. Make sure that the headgear which holds the mask or nasal pillows in place is well adjusted and the mask or headgear are the right size for your face or nose.

3. Get humidification into the equation. There are heated and passover(a passive system in which the air passes over a water reservoir and picks up humidity that way) humidifiers. Having the air forced into your nose during the course of a night can dry your nasal tissues and airway out if moisture isn't added to the system.

If you need help there are plenty of folks on this board who can help and some earlier good threads on sleep apnea and cpap. Also, there is a Yahoo group for fat apneacs not interested in weight loss(sa-sleepapnea) which can be helpful. If you'd like you can Private message me with questions if you'd like.

Happy FA

PS I've found that finding CPAP really gave me back my life and enhanced the quality of life I had immeasurably. Since then I've tried very hard to help others find the way to treat their sleep apnea. You've done the hard part, which is recognizing you've got a condition which requires treatment(there really isn't a "cure", and the operations that exist are NOT a cure), and you've gotten a tool which should help you treat yourself.

[imfree]

I have one that I don't use and would be glad to ship it
north, to you, Violet.
Verbal HUGGZZ
To You,
Edgar

[Violet_Beauregard]

Going on 10 year CPAP/BiPAP user here. Three "from personal experiance" things come to mind...


The headgear & nasal pillows are not fitting properly, and therefore not working as intended.
There is one or more issues in addition to the apnea, detracting from your sleep quality. Example: Bad mattress.
You are inadvertently mouth breathing, which will totally defeat the function of the CPAP.


great tips.... I'll check my headgear fit and see how it goes tonight.
Mattress is new...it should be ok.
Mouth breathing might be a problem, but I don't think so.
I'm thinking the headgear was too tight.
Thanks!!!


I've been using CPAP for more than 11 years and I DID have the first day epiphany of a real change. However, it's not unusual that people find that there changes are much more modest in the short term and it takes a period of days, weeks or even a month or two until they get the full benefits of the CPAP. I've never met anyone who faithfully used it and made sure that they got a mask or nasal pillows that really fit(when you're lying down in bed the way you're actually going to sleep-rather than sitting up and checking things out) who didn't realize that the change in their quality of life and quality of sleep was not profound.

There are a variety of factors which can contribute to the quality of the experience. One is the type, size and adjustment of the headgear so your mask or nasal pillows fit well. Surprisingly, most people tighten the straps too much and this makes for a poorer fit.

I'd be happy to give you tips or advice about the use of the machine, but the three most important bits of advice would be:

1. Use the machine whenever you're going to sleep, whether at night or for a nap.(and if you're going to travel, take it along with you).

2. Make sure that the headgear which holds the mask or nasal pillows in place is well adjusted and the mask or headgear are the right size for your face or nose.

3. Get humidification into the equation. There are heated and passover(a passive system in which the air passes over a water reservoir and picks up humidity that way) humidifiers. Having the air forced into your nose during the course of a night can dry your nasal tissues and airway out if moisture isn't added to the system.

If you need help there are plenty of folks on this board who can help and some earlier good threads on sleep apnea and cpap. Also, there is a Yahoo group for fat apneacs not interested in weight loss(sa-sleepapnea) which can be helpful. If you'd like you can Private message me with questions if you'd like.

Happy FA

PS I've found that finding CPAP really gave me back my life and enhanced the quality of life I had immeasurably. Since then I've tried very hard to help others find the way to treat their sleep apnea. You've done the hard part, which is recognizing you've got a condition which requires treatment(there really isn't a "cure", and the operations that exist are NOT a cure), and you've gotten a tool which should help you treat yourself.

I am going to check on the headgear. I do think it might have been too tight. The nasal pillows fit OK and all-in-all I think they're OK, but I do think it might have been too tight around my head.


I have one that I don't use and would be glad to ship it
north, to you, Violet.
Verbal HUGGZZ
To You,
Edgar

Thanks...I have the whole shebang already. I appreciate the offer.




I am hoping this will improve over the next week. Perhaps if I adjust the headgear, etc. it will help. I didn't get the humidifier, but I think I will. I've heard it will be helpful.

I think too, that this is an attitude issue with me as well. I've been resisting it. My arousal incidents were low and as I said, my case is quite mild, but it's still there. But, in my addled brain, it's yet another problem attributed to being fat, which just pisses me off. I need to work on accepting that using the mask nightly is a small price to pay for feeling better.

Thanks all!

[Happy FA]

I have one that I don't use and would be glad to ship it
north, to you, Violet.
Verbal HUGGZZ
To You,
Edgar

Humidifiers are not something that can be added on from someone else's machine. The cpap machines themselves usually have provision for them to be included and are incorporated into the machine itself.

If you aren't using your humidifier, you should try it and see what a difference it can make in the quality of how you feel.

[Violet_Beauregard]

Humidifiers are not something that can be added on from someone else's machine. The cpap machines themselves usually have provision for them to be included and are incorporated into the machine itself.

If you aren't using your humidifier, you should try it and see what a difference it can make in the quality of how you feel.


I think I'm going to. I have to contact my doctor and have her get it ordered. A prescription is required for the order.

Thank you for the suggestion!

[Ho Ho Tai]

OK, about 3 months ago I was diagnosed with a mild case of sleep apnea. I have RELUCTANTLY (to say the least) accepted this. On Friday I received my CPAP and mask (nasal pillows) and used them for the first time last night.

I'm not impressed. . . .

Anyone else use a CPAP? What were your results after once use? What can I expect after regular use?

Thanks!!! :)

Violet, as pointed out, below, there are a number of excellent threads on this topic, including this one:
http://www.dimensionsmagazine.com/forums/showthread.php?t=5417&highlight=apnea+cpap
I think most of them can be found by searching the board for [ apnea CPAP ].

In the thread indicated, I posted several messages on the experience of a non-apnea spouse; in particular, how the CPAP affected the cuddling intimacy we were accustomed to sharing when sleeping, and how we solved it. But mine is admittedly a minor, and rather specialized, contribution. There are many more (and more useful) first-person posts.

Mrs Ho Ho regularly peruses a board devoted to apnea. I think that the posts here are, for the most part, better articulated, more specific, and with richer content than what I have seen on the apnea board.

[Violet_Beauregard]

Thank you so much! I read thru that entire thread...what a wealth of info. I'm going to stick with it.... I'm sure it will work out. I think I was very disappointed in the fact that I didn't get better results on the first night.

Thanks again!!




Violet, as pointed out, below, there are a number of excellent threads on this topic, including this one:
http://www.dimensionsmagazine.com/forums/showthread.php?t=5417&highlight=apnea+cpap
I think most of them can be found by searching the board for [ apnea CPAP ].

In the thread indicated, I posted several messages on the experience of a non-apnea spouse; in particular, how the CPAP affected the cuddling intimacy we were accustomed to sharing when sleeping, and how we solved it. But mine is admittedly a minor, and rather specialized, contribution. There are many more (and more useful) first-person posts.

Mrs Ho Ho regularly peruses a board devoted to apnea. I think that the posts here are, for the most part, better articulated, more specific, and with richer content than what I have seen on the apnea board.

[BigBeautifulMe]

Violet - I don't know if you saw my posts are not, but I know quite a bit about CPAP and getting it to work for you. Feel free to PM me. Also, I'm a regular contributor at CPAPtalk.com, and in the chat room there as well. Stop by and say hi - people there are SO knowledgeable.

[Violet_Beauregard]

I did see your posts and they were quite helpful. Thanks so much!! I'm going to give it another try tonight. I'm hoping it will get better as I go along. As I said, I'm just surprised there wasn't a quicker result. From all I've heard, it's literally an overnight thing...but, everyone's different I suppose. I'll keep in touch and let you know how it goes though....

Thanks again!!



Violet - I don't know if you saw my posts are not, but I know quite a bit about CPAP and getting it to work for you. Feel free to PM me. Also, I'm a regular contributor at CPAPtalk.com, and in the chat room there as well. Stop by and say hi - people there are SO knowledgeable.

[BigBeautifulMe]

It took me a year and a half (I had an incompetent doctor and DME). My story is a rarity - but there are definitely people who take much longer. It's overnight for a few, but for most it takes at least a week, for many several months. It really depends on how severe your apnea is and how long you've been going without good sleep (you'll have sleep debt to pay off). If you start feeling like your mouth is getting quite dry, or if your throat starts getting sore, those are both signs of mouth-breathing, so keep an eye on that. Good luck, and don't give up! :)

[Sandie S-R]

.....But, in my addled brain, it's yet another problem attributed to being fat, which just pisses me off.....

Violet...

There are fat people that have sleep apnea, and there are thin people that have sleep apnea. Do you think that the thin folks beat themselves up for having apnea? (Of course they don't!) So, please don't give yourself a hard time about this. Love your body, and treat it with care. :)

Hang in there!!

[imfree]

Violet...

There are fat people that have sleep apnea, and there are thin people that have sleep apnea. Do you think that the thin folks beat themselves up for having apnea? (Of course they don't!) So, please don't give yourself a hard time about this. Love your body, and treat it with care. :)

Hang in there!!
Sandie, I'll give a hearty AMEN to that. I was about 350 when my sleep study was done. My apnea turned out to be central, and not the obstructive kind that is associated with obesity. "They" had me beating my self to death over that" blame obestiy for everything" philosophy, I was blaming my obesity for everything.
The Fat Avenger,
Edgar

[Violet_Beauregard]

Day 2 has been pretty much the same. My nose is getting sore already! I am going to hate this... grrrr... I'm sticking with it though. :)


It took me a year and a half (I had an incompetent doctor and DME). My story is a rarity - but there are definitely people who take much longer. It's overnight for a few, but for most it takes at least a week, for many several months. It really depends on how severe your apnea is and how long you've been going without good sleep (you'll have sleep debt to pay off). If you start feeling like your mouth is getting quite dry, or if your throat starts getting sore, those are both signs of mouth-breathing, so keep an eye on that. Good luck, and don't give up! :)

[Violet_Beauregard]

I'll agree with you there..... I just really don't like wearing the mask...it's intrusive and inconvenient. It's only the nasal pillows too! I can't even imagine wearing the whole mask.

I'm getting there though.... thanks for the support and encouragement! :)



Violet...

There are fat people that have sleep apnea, and there are thin people that have sleep apnea. Do you think that the thin folks beat themselves up for having apnea? (Of course they don't!) So, please don't give yourself a hard time about this. Love your body, and treat it with care. :)

Hang in there!!

[BigBeautifulMe]

Go out to the drugstore and buy some Ayr gel (in with the over the counter nasal sprays, etc). It can really help with that soreness. If you tell me which nasal pillows system you have, I might be able to advise you even further and/or point you in the direction of "fixes" for your particular mask. :) Great job on sticking with it so far. :)

[missaf]

Here's to sticking with it. It can take quite some time to get used to the pillows or simply just having something on your head at night. My dad took Lunesta to also help him get over the hump of growing accustomed to his CFLEX.

[Violet_Beauregard]

Go out to the drugstore and buy some Ayr gel (in with the over the counter nasal sprays, etc). It can really help with that soreness. If you tell me which nasal pillows system you have, I might be able to advise you even further and/or point you in the direction of "fixes" for your particular mask. :) Great job on sticking with it so far. :)

I have the Mirage Swift Nasal Pillows (I think is the name) by ResMed. The soreness is right on the edge of the bottom of my nose (above my lip). It's like I've had the sniffles and been blowing my nose too much. I put medicated chap stick on it last night and I've been putting antibiotic ointment on it to hopefully sooth it today. Last night I loosened the head straps a bit, but it was still annoying.

If you can suggest anything else, I'm wide open to hear it! Thanks so much for the help and support... I really appreciate it!!



Here's to sticking with it. It can take quite some time to get used to the pillows or simply just having something on your head at night. My dad took Lunesta to also help him get over the hump of growing accustomed to his CFLEX.

The straps on my head aren't so bad, though I'm not real happy about the condition they leave my hair in the next morning, but I can deal with that. The nasal pillows are.... OK.... at best. I just can't stand them! I wish they weren't so large..... not the holes, but the whole thing in general. I want one of those tiny tubes they use for oxygen when you're in the hospital! LOL

I'm giving it the old college try though. I nearly gave up last night, but I kept it on.

Thanks for the support....it's so helpful to hear from others in the same position!

[imfree]

I have the Mirage Swift Nasal Pillows (I think is the name) by ResMed. The soreness is right on the edge of the bottom of my nose (above my lip). It's like I've had the sniffles and been blowing my nose too much. I put medicated chap stick on it last night and I've been putting antibiotic ointment on it to hopefully sooth it today. Last night I loosened the head straps a bit, but it was still annoying.

If you can suggest anything else, I'm wide open to hear it! Thanks so much for the help and support... I really appreciate it!!





The straps on my head aren't so bad, though I'm not real happy about the condition they leave my hair in the next morning, but I can deal with that. The nasal pillows are.... OK.... at best. I just can't stand them! I wish they weren't so large..... not the holes, but the whole thing in general. I want one of those tiny tubes they use for oxygen when you're in the hospital! LOL

I'm giving it the old college try though. I nearly gave up last night, but I kept it on.

Thanks for the support....it's so helpful to hear from others in the same position!
I am very proud of you, Violet, for accepting your condition
and the responsibility of managing it! I use a ResMed, too. The tiny tube you use in the hospital is a cannula. I wear one when I'm up, but I'd never want to get tangled-up in one while asleep!I manage several conditions, myself.
I have victory over them and I live in peace and joy!!! I really believe that
I will live to a remarkably old age, despite my conditions. I pray for you to
have peace, comfort, and abundant life!!! My doctor would tell you that I'm
not crazy, just profoundly passionate!!!
The Man Of
Great Passion,
Edgar

[Violet_Beauregard]

Thanks Edgar, I appreciate it.



I am very proud of you, Violet, for accepting your condition
and the responsibility of managing it! I use a ResMed, too. The tiny tube you use in the hospital is a cannula. I wear one when I'm up, but I'd never want to get tangled-up in one while asleep!I manage several conditions, myself.
I have victory over them and I live in peace and joy!!! I really believe that
I will live to a remarkably old age, despite my conditions. I pray for you to
have peace, comfort, and abundant life!!! My doctor would tell you that I'm
not crazy, just profoundly passionate!!!
The Man Of
Great Passion,
Edgar

[Zandoz]

Mattress is new...it should be ok.

The externals can be other things besides just mattress...for example the way you lay with your head on the pillow. If it causes you the drastically tilt your head down...chin to chest kind of position...it can restrict your breathing. For me at least, I have a very hard time finding pillows that are "just right". Also, things like Restless Leg Syndrome can have a big impact. Or even something as simple as a pet disturbing your sleep.

With the CPAP you've taken a big step towards correcting sleep inhibiting problems...but that is not the point to stop looking for other causes.

[Violet_Beauregard]

I may have to look into replacing my pillows...they're old and comfy, but not real supportive. Good thoughts! Thanks so much for the info and support....


The externals can be other things besides just mattress...for example the way you lay with your head on the pillow. If it causes you the drastically tilt your head down...chin to chest kind of position...it can restrict your breathing. For me at least, I have a very hard time finding pillows that are "just right". Also, things like Restless Leg Syndrome can have a big impact. Or even something as simple as a pet disturbing your sleep.

With the CPAP you've taken a big step towards correcting sleep inhibiting problems...but that is not the point to stop looking for other causes.

[BigBeautifulMe]

You're welcome, Vi. :) I'm glad you didn't give up last night. A lot of CPAP users I know use one of two bed pillows - either the "Shapeable Pillow" from Target, or the PAPillow from talkaboutsleep.com. The Shapeable Pillow is like a normal pillow, but can be shaped/molded, and will stay in that position. You can shape it so that it doesn't put pressure on the nasal pillows, and then sleep with it like that. The PAPillow is kind of T-shaped, with "holes" cut into the sides so that you can support your head, but, again, not put pressure on the mask.

The nasal pillows should rest just inside the bottom of your nostrils - they shouldn't go really far up into your nostrils. If they're not fitting like this, you may be wearing too large a size. Try the next size down. Your mask should have come with Small, Medium, and Large nasal pillows. If the place that sold it to you gave you only one size, that means that they took the other two sizes so they could resell them to other people (in my opinion, highly unethical, but a lot of places do this). I would go back to them and say "I discovered my mask is supposed to come with three sizes of pillow, and this size isn't working for me, I'd like to try the other two. Could you get those for me, please?" Don't act like they're doing you a favor - just act like you think they may have made an honest mistake, but you need them to correct it so you can get better treatment.

If you're a stomach sleeper like I am, the Swift works for some people, but not all. If you just can't get used to it, see if your insurance will pay for another mask (most pay for at least two per year). Try another kind of nasal pillow. I personally use the Invacare TwilightNP (the NP means Nasal Pillow). Most DMEs (Durable Medical Equipment providers, the places that sell masks and machines) don't stock this mask, because it's not popularly known, but on the boards I frequent it's known as - bar none - the best mask for stomach sleepers, and 99% of the time, the DME will special order it for you. It comes with two sizes of nasal pillows - make sure the DME gives you both so you can pick the size that works for you. After you get it, you add an extra "homemade" strap around to stabilize the nasal pillows, and, presto, you've got something you can actually stomach sleep on. I hadn't been able to sleep without hanging the mask off the pillow in quite some time when I tried this mask, and it was quite a relief.

The homemade strap is made buy cutting off a leg from a pair of women's tights (I didn't want to cut up a pair of expensive plus-size tights, so I went to Walmart and purchased some in a small size just for this purpose). After you cut off a leg, all you do is use that leg like a strap. Hold the halfway point of that leg in front of your mask, and tie the two ends behind your head, tightening the "strap" against your mask. I usually just put one end over the other like I'm tying my shoe laces, but do it twice (this is called a double starting knot, and if you're having trouble picturing it you can check out http://www.fieggen.com/shoelace/doublestartknot.htm , which has diagrams). That keeps it in place all night, and makes it easy to take off in the morning.

This is also something you can do with your swift to help stabilize it if it moves around a lot. Also, to keep the back strap of the Swift from riding up (and also to help preserve your hair), if it's long enough, put your hair in a ponytail. That'll keep the strap from shifting, and keep the mask from popping off in the middle of the night.

Don't forget the Ayr gel - it really does work for nasal soreness.

Whew, that was a lot of information. I hope at least some of it is helpful.

ETA: Forgot to mention that hanging the hose above your bed can be very helpful in keeping the mask from getting tugged around by the hose all night. It really does help with comfort, and you won't get tangled up in the hose, or keep rolling over on the hose when you toss and turn. Here's a great resource for reading about different ways to do that: http://www.cpaptalk.com/viewtopic.php?t=10640
I personally use the 3M cord bundler. It's one of those "command hooks" you put on the wall and can take down without damaging it. It isn't a traditional "hook shape," and it holds the hose just perfectly. For people who dont' have a headboard to help them in hanging the hose, it really works quite well. I like it because I can take it down and take it on trips with me. :)

If you want any more reading on these topics (as well as some reading on "fixes" other users have applied to the Swift, let me know and I can point you in the right directions. There is SO much information out there. :D

[Violet_Beauregard]

You're right...that's a lot of info! VERY helpful though....

I'm a side sleeper...any suggestions there? I am going to check out the pillows though. I like that Shapeable one...that might be good...

Is there any type of mask that doesn't use headgear? I thought I saw one online that holds the pillows to the nose with a mouth piece? Any ideas?



You're welcome, Vi. :) I'm glad you didn't give up last night. A lot of CPAP users I know use one of two bed pillows - either the "Shapeable Pillow" from Target, or the PAPillow from talkaboutsleep.com. The Shapeable Pillow is like a normal pillow, but can be shaped/molded, and will stay in that position. You can shape it so that it doesn't put pressure on the nasal pillows, and then sleep with it like that. The PAPillow is kind of T-shaped, with "holes" cut into the sides so that you can support your head, but, again, not put pressure on the mask.

The nasal pillows should rest just inside the bottom of your nostrils - they shouldn't go really far up into your nostrils. If they're not fitting like this, you may be wearing too large a size. Try the next size down. Your mask should have come with Small, Medium, and Large nasal pillows. If the place that sold it to you gave you only one size, that means that they took the other two sizes so they could resell them to other people (in my opinion, highly unethical, but a lot of places do this). I would go back to them and say "I discovered my mask is supposed to come with three sizes of pillow, and this size isn't working for me, I'd like to try the other two. Could you get those for me, please?" Don't act like they're doing you a favor - just act like you think they may have made an honest mistake, but you need them to correct it so you can get better treatment.

If you're a stomach sleeper like I am, the Swift works for some people, but not all. If you just can't get used to it, see if your insurance will pay for another mask (most pay for at least two per year). Try another kind of nasal pillow. I personally use the Invacare TwilightNP (the NP means Nasal Pillow). Most DMEs (Durable Medical Equipment providers, the places that sell masks and machines) don't stock this mask, because it's not popularly known, but on the boards I frequent it's known as - bar none - the best mask for stomach sleepers, and 99% of the time, the DME will special order it for you. It comes with two sizes of nasal pillows - make sure the DME gives you both so you can pick the size that works for you. After you get it, you add an extra "homemade" strap around to stabilize the nasal pillows, and, presto, you've got something you can actually stomach sleep on. I hadn't been able to sleep without hanging the mask off the pillow in quite some time when I tried this mask, and it was quite a relief. The homemade strap is made buy cutting off a leg from a pair of women's tights (I didn't want to cut up a pair of expensive plus-size tights, so I went to Walmart and purchased some in a small size just for this purpose). After you cut off a leg, all you do is use that leg like a strap. Hold the halfway point of that leg in front of your mask, and tie the two ends behind your head, tightening the "strap" against your mask. I usually just put one end over the other like I'm tying my shoe laces, but do it twice (this is called a double starting knot, and if you're having trouble picturing it you can check out http://www.fieggen.com/shoelace/doublestartknot.htm , which has diagrams). That keeps it in place all night, and makes it easy to take off in the morning.

This is also something you can do with your swift to help stabilize it if it moves around a lot. Also, to keep the back strap of the Swift from riding up (and also to help preserve your hair), if it's long enough, put your hair in a ponytail. That'll keep the strap from shifting, and keep the mask from popping off in the middle of the night.

Don't forget the Ayr gel - it really does work for nasal soreness.

Whew, that was a lot of information. I hope at least some of it is helpful.

[BigBeautifulMe]

Violet, the device you're talking about is the CPAPpro, and it's a NOTORIOUSLY bad interface. Out of about 100 people I've seen try it, only one has had any success with it. The vast majority say it is poorly made, and breaks easily and quickly. Those that have software to monitor their treatment say they have many more apneas when using it than they do with other masks. In other words, it's one you probably want to stay away from.

Side sleepers also like the TwilightNP, but lots of them like the Swift as well, so you've got a good interface for the way you sleep. Do check out the shapeable pillow - I hope it helps. And if you find it shifting, try the pantyhose strap. It will probably help. :)

Good luck! :D

[SummerG]

Violet! We are cpap twins, lol... I just got my machine on friday too! First night I was able to keep the mask on (I have a nasal mask) but then sat & sun night i woke up to find i had removed the mask. Last night I kept it on for 5 hours straight! I'm very excited myself, about the possibilities that treatment brings.

I didn't feel that "wahoo!" feeling the 1st night either... nor 2nd & 3rd... but today I woke up singing... and feeling more energetic than I had in years. I'm hoping it wasn't a fluke and it continues :)

good luck to you in this journey! i know it's sort of tough (emotionally & physically) but we can do it! :D

[Violet_Beauregard]

Ok...great... thanks for letting me know. I'm going to see how it goes tonight.

I'll let you know!! :)



Violet, the device you're talking about is the CPAPpro, and it's a NOTORIOUSLY bad interface. Out of about 100 people I've seen try it, only one has had any success with it. The vast majority say it is poorly made, and breaks easily and quickly. Those that have software to monitor their treatment say they have many more apneas when using it than they do with other masks. In other words, it's one you probably want to stay away from.

Side sleepers also like the TwilightNP, but lots of them like the Swift as well, so you've got a good interface for the way you sleep. Do check out the shapeable pillow - I hope it helps. And if you find it shifting, try the pantyhose strap. It will probably help. :)

Good luck! :D

[Violet_Beauregard]

My twin!!!! Hey!! Well congrats on your success so far! I look forward to the possibilities that treatment can bring, but not very optimistic. I WANT it to work, but am quite skeptical. I'll be curious to see how the next few nights go. I'm hoping after a few more days that it will bring more results.

*reaching for your hand* Here we go down this journey together!! Good luck to us!!

Keep me posted on your progress!





Violet! We are cpap twins, lol... I just got my machine on friday too! First night I was able to keep the mask on (I have a nasal mask) but then sat & sun night i woke up to find i had removed the mask. Last night I kept it on for 5 hours straight! I'm very excited myself, about the possibilities that treatment brings.

I didn't feel that "wahoo!" feeling the 1st night either... nor 2nd & 3rd... but today I woke up singing... and feeling more energetic than I had in years. I'm hoping it wasn't a fluke and it continues :)

good luck to you in this journey! i know it's sort of tough (emotionally & physically) but we can do it! :D

[Violet_Beauregard]

Well, Day 3...still not impressed... LOL

I loosened the headgear a bit and it helped a bit... the nasal pillows didn't seem so far up my nose. It's still difficult to sleep with the thing....to find a comfortable position. I'm not a back sleeper, but that's the only place the mask doesn't get in the way.

I did feel a LITTLE better when I woke up this morning, so we'll see.

:happy:

[imfree]

Hang in there, Sweetie. Even before oxygen was connected, my BiPAP
increased by blood-oxygen saturation by 8% and saved my life!
Blazing With Life,
Edgar

[-X-]

Is there any way to reverse sleep apnea ? Or once you get it, its always there ?

[BigBeautifulMe]

X, a small number of users see apnea elimination with significant weight loss. Most, though, have to use CPAP even if they DO manage to lose all the "excess" weight - just at a lower pressure.

Additionally, there are surgeries that are touted as being for apnea. However, the vast, vast majority of these have dismal success rates at best. IMHO, the risk is not worth it. I can't tell you how many people I've seen on my apnea board say "I had the surgery, but I still have to use CPAP!" Again, sometimes there's a pressure reduction, but in the vast majority of cases, there is still need for CPAP.

I've even seen several people say the scar tissue that formed post-surgery made it so that they can't use CPAP effectively anymore, but still have apnea - which means they have to either take hugely drastic steps (generally, a tracheotomy) or live with untreated apnea (NOT a safe thing to do, as every time you sleep that way, you're damaging your vital organs). A procedure known as the UPPP is notorious for results like that.

There's only one procedure that's been at all more successful (and still, I think it only has a 60% success rate), and that's called the MMA/GA. In this surgery, they break your jaw and advance it. It's brutal. Even with this surgery, oftentimes there is reduction in apnea, but not elimination.

So I guess the short answer to your question would be "No." LOL

Violet - good job. Don't give up! Be a hard-headed stick-to-it gal - it is SO worth it! :D

[imfree]

Is there any way to reverse sleep apnea ? Or once you get it, its always there ?
Obstructive sleep apnea can be treated, and sometimes reversed, by
weight-loss and surgery. My apnea is central, caused by a central nervous system disorder. After 2 near-electrocutions and leaving heavy alcohol use
behind me, my nervous system could have been damaged, but there is hope,
for even me. I am thriving under BiPAP treatment!
That Which Does Not
Kill Me......,
Edgar

[LillyBBBW]

Are these things expensive? Does insurance cover them? Sounds like a big deal.

[BigBeautifulMe]

If you're referring to CPAPs, Lilly, insurance does indeed cover them. There's usually a co-pay of some sort, like anything else. Most insurance companies also cover two masks per calendar year, as well as various other amounts of supplies.

If you're talking about the surgery, it depends on the surgery and who the insurer is.

Even if it's necessary to buy a CPAP out of pocket, it's worth it (a top-of-the-line machine can be purchased online for about $700 - others that aren't top-of-the-line but still work perfectly for most folks can be had for even less). Being treated for apnea has been life-changing for me, and lots of other people, too. I can genuinely say I love my CPAP, and can't sleep without it now.

[LillyBBBW]

I suspect I have some form of apnea but only when I sleep on my back. I rarely sleep on my back so I never gave it much thought. Though now that I've gotten bigger I experience stress on my body from sleeping on my side or front and wake up achy and sore. Sleeping on my back however results in waking every few moments in mid choke. Pretty telling in my view. I've thought of investigating a device but I've wondered if it's worth the hassle and expense if strategically placed pillows or a matress topper will make my positions more comfortable without having to buy something extra to lug about with me when I travel, and I travel a lot. Plus will the darn thing work internationally, how much does it weight for customs limitations on luggage, does it cost extra for that model and will I survive the trial and error of finding the right one, bla bla bla. I'm not turned off or stigmatized about using one if I need one I'm just lazy and don't feel like being bothered. The way some people are singing about it here though makes me wonder if maybe it IS worth the hassle and cash.

If you're referring to CPAPs, Lilly, insurance does indeed cover them. There's usually a co-pay of some sort, like anything else. Most insurance companies also cover two masks per calendar year, as well as various other amounts of supplies.

If you're talking about the surgery, it depends on the surgery and who the insurer is.

Even if it's necessary to buy a CPAP out of pocket, it's worth it (a top-of-the-line machine can be purchased online for about $700 - others that aren't top-of-the-line but still work perfectly for most folks can be had for even less). Being treated for apnea has been life-changing for me, and lots of other people, too. I can genuinely say I love my CPAP, and can't sleep without it now.

[BigBeautifulMe]

It truly is, Lilly. And I can answer a few of those for you.
Most CPAPs weigh around 2-4 pounds. They're not that heavy. I've travelled with mine to Spain, France, and Portugal and had no problems. You'll need an outlet adapter like you would for any other electrical device, but that's it. The vast majority of CPAPs out there now run on either 110 or 220 without needing any special adapter.

For domestic flights, CPAP is not counted towards your carry-on limit. For international flights originating from countries other than the US I think they ARE allowed to count it - but they never did for me.

The trial and error of finding the machine is not bad - it's finding the right mask that can be a bitch. But seriously, Lilly, it truly is worth it, and as you age, apnea usually just gets worse and worse if untreated.

For most people, treating apnea helps a host of other health problems. For many people, their blood pressure is lowered, and gastric reflux disease is lessened (if not eliminated entirely). I personally was a walking zombie, and was having serious problems with short-term memory. CPAP has helped with that significantly. Because I didn't discover I had it for so long (they think I've had apnea my whole life), I've already done damage to my heart, lungs, and brain that can't be reversed. This truly is a dangerous disorder. I think you're a fabulous woman, and I can only say - don't let it happen to you. Nip it in the bud. It's a TOTAL PAIN IN THE BUTT getting adjusted to and finding the right mask, but it adds years to your life in the end. And while you're going through that process, you'll have us around to support you. I'll be happy to talk to you about it anytime you want. And I'll see you this weekend, so you can check out my setup and see it's not as terrifying as you probably think. :)

[LillyBBBW]

Do you have to go to a special kind of doctor for that or can your primary care doctor prescribe one?

[BigBeautifulMe]

If you want to do it "legally" you have to get a sleep test, which your primary doc refers you to. For me, that was the worst part, just because I'm not the type that does well sleeping in beds that aren't my usual one. But it's usually only one night - if they determine you have apnea in the first half of the study, they'll hook you up to a CPAP for the second half and titrate you (ie, determine what pressure you need) for the second half. Insurance covers this as well.

If someone knew for sure already that they had apnea, they could always just go to Yahoo Auctions and look for a RemStar Auto. These machines are, in my opinion, top of the line. They're auto-adjusting - they determine your proper pressure by reading the way you're breathing. They're also data capable, so with software and a card reader (which can be had inexpensively if you know where to look) you can easily monitor your own treatment (even for people who DO get a sleep study, this is the kind of machine I always recommend. It's the kind I have, too). There are auto-adjusting machines made by other manufacturers (ResMed, for one) but the Respironics (RemStar) Auto is the only one that has exhale relief available in auto mode, something that can be crucial for people that need a higher pressure.

But for someone that wasn't 100% sure they had apnea, I would definitely recommend going the sleep study route, since there could be something else going on. It's hard to tell exactly, sometimes, because we can't exactly watch ourselves sleep. :)

ETA: Since I haven't said it yet in this CPAP thread, I just want to reiterate - I'm NOT a medical professional of any kind. I'm simply a CPAP user who threw myself into learning everything I could about CPAP upon finding out I needed it. I've done quite a bit of reading on this topic, and I've had discussions with numerous Respiratory Therapists. That's where I get my info - mostly from reading studies, and talking to other users about their own experiences. Anyone who thinks they may have sleep apnea should definitely talk to their doctor. :)

[SummerG]

Do you have to go to a special kind of doctor for that or can your primary care doctor prescribe one?

hey chiquita! you have to have a prescription for the machine... and generally speaking i've heard you have to have a sleep study then get the prescription from a sleep disorder doctor.

i wanted to add in that most insurances cover these things... however mine (blue cross blue shield hmo) cover half the cost of the machine... but will not cover the humidifier, hoses or masks. also they wont outright buy the machine, so they rent it (according to my DME my ins. co. is the worst) till they deem it a true necessity. so i had to shell out about $325 (which may be the end for my vegas party plans :( ) for my machine, and will have to pay monthly "rental fees" quite honestly, i may just buy a the same machine straight out from an online company (minus the humidifier since i bought it already) since the DME hikes the price up so much anyhow.

so.. a big pain in the butt this all is... but i'm still happy to have it... i think it's making a difference, not a hugely noticeable difference yet, but i have faith that it is doing what it should.

[LillyBBBW]

hey chiquita! you have to have a prescription for the machine... and generally speaking i've heard you have to have a sleep study then get the prescription from a sleep disorder doctor.

i wanted to add in that most insurances cover these things... however mine (blue cross blue shield hmo) cover half the cost of the machine... but will not cover the humidifier, hoses or masks. also they won't outright buy the machine, so they rent it (according to my DMS my ins. co. is the worst) till they deem it a true necessity. so i had to shell out about $325 (which may be the end for my vegas party plans :( ) for my machine, and will have to pay monthly "rental fees" quite honestly, i may just buy a the same machine straight out from an online company (minus the humidifier since i bought it already) since the DMS hikes the price up so much anyhow.

so.. a big pain in the butt this all is... but i'm still happy to have it... i think it's making a difference, not a hugely noticeable difference yet, but i have faith that it is doing what it should.

Can I piggy back off you and watch what becomes of you? Seriously, $325 is a lot of scratch and I have a BC/BS hmo too. Looks like they deliberately fix it so people will instead pay for them outright since that comes out cheaper in the long run. Scurvy bastards. :mad: I swear, everybody is on the take in this town.

Meantime I'm going to set up my sleep study appointment. It usually takes months to get in on anything around here and if before then I change my mind I can always cancel.

[Happy FA]

Violet! We are cpap twins, lol... I just got my machine on friday too! First night I was able to keep the mask on (I have a nasal mask) but then sat & sun night i woke up to find i had removed the mask. Last night I kept it on for 5 hours straight! I'm very excited myself, about the possibilities that treatment brings.

I didn't feel that "wahoo!" feeling the 1st night either... nor 2nd & 3rd... but today I woke up singing... and feeling more energetic than I had in years. I'm hoping it wasn't a fluke and it continues :)

good luck to you in this journey! i know it's sort of tough (emotionally & physically) but we can do it! :D

Congrats on sticking with it and for working your way up to 5 hours straight of using it. The positive effects of the cpap use are definitely there, and while it's definitely a YMMV situation from person to person, if you stick with it and get the system to work for you, you will see the positive effects in many different ways.

Any special songs you were singing?

[SummerG]

Can I piggy back off you and watch what becomes of you? Seriously, $325 is a lot of scratch and I have a BC/BS hmo too. Looks like they deliberately fix it so people will instead pay for them outright since that comes out cheaper in the long run. Scurvy bastards. :mad: I swear, everybody is on the take in this town.

Meantime I'm going to set up my sleep study appointment. It usually takes months to get in on anything around here and if before then I change my mind I can always cancel.

heh, watch what becomes of me (of course you can!)... i'm hoping it gives me more energy to dance longer than 30 seconds of a song at a bbw party (which if you happen to be at one where i am, you can check out my machine, since i'll travel with it too [seriously not a twisted attempt to lure you into my room for more hugs... i swear! hehehehe]) ... though aside from health factors, I also wanted the machine because someday I hope to have to share a bed, and with my snoring & choking that pretty much was a near impossibility.

[Happy FA]

Are these things expensive? Does insurance cover them? Sounds like a big deal.

I've always had my CPAP machines and masks/hoses paid for by my Oxford(and before that BC/BS insurance). The biggest change recently has been that they've insisted on the use of a durable medical goods agent who's supposed to give me "service". They generally don't give much in the way of service. But, in terms of the machines the way they've done it most recently is that you "rent" the machine for the first year and after that time, the rental is paid off and you own the machine. From my side it makes no difference since I don't pay any of it. They also send me the new mask and hose ever 6 months(but, I have to ask for it, they don't do it on their own). For some reason they charge me for a filter for the CPAP machine($7), though I've never been able to determine why.

I have the Resmed Activa mask which is well designed for those who tend to move between their back and sides during sleep and are in different positions. I don't think it would work very well for those who are stomach sleepers. While many prefer the nasal pillow route I have always found the nasal masks to be quite comfortable and the thought of having something inside my nostrils has always been disconcerting.

It makes sense to see what coverage you have, but to definitely go forward and get yourself tested with the original sleep study so you have a sense of whether you seem to have sleep apnea, and if so how severe it is. One of the things I've discovered is that it's considered within the range of "normal" that someone have a few apnea events a night. However, people who do have significant obstructive sleep apnea(the central sleep apnea that Edgar says he has is not treatable with cpap) should definitely be getting treatment asap.

Happy FA

[BigBeautifulMe]

Actually, HappyFA, Central Apnea is not treatable with CPAP, but it is treatable with PAP therapy. Depending on the person and their situation, there are VPAPs and certain kinds of BiPAPs out there (the BiPAPST, for one) that actually monitor a person's breathing and breathe FOR them if they take too long to breathe on their own. Isn't technology amazing? :D

And you're absolutely right - an apnea/hypopnea index of 5 is considered perfectly normal. However, someone with only a few events per night is not, in general, going to be symptomatic at all, or recognize that it happens. It takes more than that to make one "aware" something's going on. :D

Lilly, I'm SO glad you're going to sign up for a sleep study. Good for you! :) Look at it this way: If you go in for a sleep study, and you have apnea, you've nipped it in the bud before it got too bad, and before it did any serious damage. If you DON'T have apnea, well, you can stop worrying that you do! :D Either way, it's a good result. :) Just my two cents (or eighty cents. LOL)

[BigBeautifulMe]

For anyone perusing this thread in the future (the following taken from a post on cpaptalk.com):

Here's a list from Wolk R, Somers VK. Cardiovascular consequences of obstructive sleep apnea. Clin Chest Med. 2003;24:195-205.

Medical Consequences of Sleep Apnea

Cardiovascular consequences of OSA
hypertension (high blood pressure)
heart failure
atherosclerosis (heart attacks, angina)
atherosclerosis (stroke)
atrial fibrillation
ventricular arrhythmias
pulmonary hypertension

Other consequences of OSA:
trauma (traffic accidents)
glaucoma
snoring spouse syndrome
diminished libido
in children: illness like attention deficit hyperactivity disorder (ADHD)
in children: slowed growth

Other associations with OSA:
obesity
obesity syndromes, such as Prader-Willi syndrome
polycystic ovary disease
renal failure
hypothyroidism
Marfan syndrome
Charcot-Marie-Tooth disease
post-polio syndrome
gastro-esophageal reflux
worsening of epilepsy

The following is from http://pennhealth.com/sleep/newsletter/winter06/heart.html

Quote:
With sleep apnea, very high levels of the stress hormone epinephrine are released hundreds of times each night. This “fight or flight” hormone puts a tremendous strain on the heart, blood vessels and other organs and also disrupts sleep. This may be one mechanism by which sleep apnea can injure the heart and blood vessels.

The National Guidelines (JNC VII) used by physicians to treat high blood pressure list OSA as a major cause of refractory high blood pressure. Recently, more worrisome connections linking OSA to an increased risk of stroke and heart attack have been published. Even after eliminating other risk factors, those with OSA are much more likely to suffer either a stroke or heart attack making sleep apnea a potent risk factor that should be aggressively treated. Sleep apnea is also associated with a variety of other cardiovascular disorders including heart failure, atrial fibrillation and sudden cardiac death.

List of common symptoms of sleep apnea:

Possible Symptoms of Sleep Apnea

• loud and frequent snoring
• periods of not breathing (apnea) during sleep, snorting, gasping, or choking during sleep
• need to urinate during the night
• awakening tired in the morning, morning headaches, daytime or evening fatigue or lethargy
• daytime or evening sleepiness when sitting or inactive, drowsy driving or falling asleep while driving
• performing actions automatically or by rote, limited attention, memory loss
• poor judgment, personality changes
• weight gain, early onset of high blood pressure, severe leg swelling
• especially in children, hyperactive behavior.

More possible hints of sleep apnea:
• COPD (chronic obstructive pulmonary disease), asthma
• heart abnormalities, stroke
• high blood pressure that doesn’t respond to medication
• acid reflux or GERD
• diabetes
• deviated septum (cartilage separating the nostrils going off midline)
• bruxism (teeth grinding)
• adult bed wetting
• irritability, mood changes, anxiety, depression
• procrastination, difficulty acting on plans or finishing projects, diminished work performance
• social withdrawal, neglected relationships
• less interest in sex, sexual dysfunction
• persistent recurring dreams of struggle and failure
• the ability to fall asleep two or three hours after getting up in the morning, and/or long naps in the afternoon, and/or sleeping nine or more hours a night

[Violet_Beauregard]

Lilly, so far my insurance has covered everything.....



Are these things expensive? Does insurance cover them? Sounds like a big deal.

[LillyBBBW]

Lilly, so far my insurance has covered everything.....

Yeah but you're pretty and you live in Ohio. Pretty girls in Ohio always get stuff free. :p

[Violet_Beauregard]

FYI... Mine was 2 nights. The first night they wired me up and monitored me. Then about 2 weeks later, they did it again, but this time I had the mask and CPAP. It still sucked..... LOLOL :)


If you want to do it "legally" you have to get a sleep test, which your primary doc refers you to. For me, that was the worst part, just because I'm not the type that does well sleeping in beds that aren't my usual one. But it's usually only one night - if they determine you have apnea in the first half of the study, they'll hook you up to a CPAP for the second half and titrate you (ie, determine what pressure you need) for the second half. Insurance covers this as well.

[Violet_Beauregard]

LOLOLO..... I don't know about pretty, but I do live in Ohio.... and FREE???? I think I missed that train... LOLOL

Hey, as skeptical as I am about this, I'm holding faith that it will work for me...eventually. Everyone is different. I keep expecting overnight results...for me, it just take a little longer. I'm just hanging in there until I have my "Oprah - full circle moment".... it'll happen....


Besides... I may be pretty, but I think you are beautiful...so you've got me beat!!



Yeah but you're pretty and you live in Ohio. Pretty girls in Ohio always get stuff free. :p

[Violet_Beauregard]

Are you SURE you're not a medical professional???? BRAVO for learning all this information. It's helpful to you and what a help you've been to me!! Not to mention everyone else!!! Wow......


For anyone perusing this thread in the future (the following taken from a post on cpaptalk.com):

Here's a list from Wolk R, Somers VK. Cardiovascular consequences of obstructive sleep apnea. Clin Chest Med. 2003;24:195-205.

Medical Consequences of Sleep Apnea

Cardiovascular consequences of OSA
hypertension (high blood pressure)
heart failure
atherosclerosis (heart attacks, angina)
atherosclerosis (stroke)
atrial fibrillation
ventricular arrhythmias
pulmonary hypertension

Other consequences of OSA:
trauma (traffic accidents)
glaucoma
snoring spouse syndrome
diminished libido
in children: illness like attention deficit hyperactivity disorder (ADHD)
in children: slowed growth

Other associations with OSA:
obesity
obesity syndromes, such as Prader-Willi syndrome
polycystic ovary disease
renal failure
hypothyroidism
Marfan syndrome
Charcot-Marie-Tooth disease
post-polio syndrome
gastro-esophageal reflux
worsening of epilepsy

The following is from http://pennhealth.com/sleep/newsletter/winter06/heart.html

Quote:
With sleep apnea, very high levels of the stress hormone epinephrine are released hundreds of times each night. This “fight or flight” hormone puts a tremendous strain on the heart, blood vessels and other organs and also disrupts sleep. This may be one mechanism by which sleep apnea can injure the heart and blood vessels.

The National Guidelines (JNC VII) used by physicians to treat high blood pressure list OSA as a major cause of refractory high blood pressure. Recently, more worrisome connections linking OSA to an increased risk of stroke and heart attack have been published. Even after eliminating other risk factors, those with OSA are much more likely to suffer either a stroke or heart attack making sleep apnea a potent risk factor that should be aggressively treated. Sleep apnea is also associated with a variety of other cardiovascular disorders including heart failure, atrial fibrillation and sudden cardiac death.

List of common symptoms of sleep apnea:

Possible Symptoms of Sleep Apnea

• loud and frequent snoring
• periods of not breathing (apnea) during sleep, snorting, gasping, or choking during sleep
• need to urinate during the night
• awakening tired in the morning, morning headaches, daytime or evening fatigue or lethargy
• daytime or evening sleepiness when sitting or inactive, drowsy driving or falling asleep while driving
• performing actions automatically or by rote, limited attention, memory loss
• poor judgment, personality changes
• weight gain, early onset of high blood pressure, severe leg swelling
• especially in children, hyperactive behavior.

More possible hints of sleep apnea:
• COPD (chronic obstructive pulmonary disease), asthma
• heart abnormalities, stroke
• high blood pressure that doesn’t respond to medication
• acid reflux or GERD
• diabetes
• deviated septum (cartilage separating the nostrils going off midline)
• bruxism (teeth grinding)
• adult bed wetting
• irritability, mood changes, anxiety, depression
• procrastination, difficulty acting on plans or finishing projects, diminished work performance
• social withdrawal, neglected relationships
• less interest in sex, sexual dysfunction
• persistent recurring dreams of struggle and failure
• the ability to fall asleep two or three hours after getting up in the morning, and/or long naps in the afternoon, and/or sleeping nine or more hours a night

[BigBeautifulMe]

Nope, I'm not a medical professional - just a good researcher. I pretty much had to be. I got stuck with an incompetent doctor and DME. My treatment got off to a very rocky start, thanks to that.

I didn't sleep well during either of my studies (I had two, too by the way - they didn't get enough data during the first four hours of the first study to just hook me up to a CPAP then and there). I kept telling the tech I didn't sleep at all, but he kept saying 'your brain waves don't lie. you slept just fine.' When they titrated me - same thing. So when i got my machine, I used it all night, ever night from day 1. I was determined that I was going to let this thing help me. But I kept feeling suffocated. I kept telling the doc I didn't think my pressure was high enough - I couldn't breathe. But he kept saying "your titration study was flawless. I'm not upping your pressure."

So I stayed at the same pressure for 8 months, and felt no better at all. Finally, I found CPAPtalk.com and learned about the existence of Auto-adjusting machines. My sleep doc (the one that read my sleep study and refused to up my pressure) refused to prescribe me one. He said that autos didn't work, and that they only responded to apneas AFTERwards, and so did no one any good at all. I showed him several studies published in NEJM and JAMA and the like proving that autos are quite beneficial, and, showing that, while they originally were questionable in the way they worked when they first came out, they had been updated and improved so much that patients oftentimes did better on them than they did in having a lab titration study and put on straight CPAP. He still refused to even consider it. So I went to my GP back home, who wrote me an RX for an auto machine then and there. I took my used CPAP to the DME, gave them the new RX, and traded it for my brand new auto.

The auto showed that (surprise, surprise) I had been BADLY undertitrated. I actually require a pressure of 11 to keep my airway open. I was titrated at 6. In CPAP pressure, that's a HUGE difference. Ever since I found my auto, and found the mask that actually lets me sleep comfortably, I'm doing SO much better. Ironically, and not surprisingly, when my GP asked my sleep doc for a copy of my titration study, that study had mysteriously "disappeared." Sometimes the best thing we can do is make sure we're in charge of our own health, and not let our doctors take over the reins entirely. Doctors are human, too. Just MHO.

[LillyBBBW]

You are so right BBM. Years ago I learned that with doctors you have to tell them what you want, not ask for it. I was going through a medical thing years ago and several people told me that but I figured the doctor answered to no one. I've learned my lesson good. Granted that I've done my research and what I'm asking for is not poisonous or harmful I've learned to always insist or go elsewhere.


Nope, I'm not a medical professional - just a good researcher. I pretty much had to be. I got stuck with an incompetent doctor and DME. My treatment got off to a very rocky start, thanks to that.

I didn't sleep well during either of my studies (I had two, too by the way - they didn't get enough data during the first four hours of the first study to just hook me up to a CPAP then and there). I kept telling the tech I didn't sleep at all, but he kept saying 'your brain waves don't lie. you slept just fine.' When they titrated me - same thing. So when i got my machine, I used it all night, ever night from day 1. I was determined that I was going to let this thing help me. But I kept feeling suffocated. I kept telling the doc I didn't think my pressure was high enough - I couldn't breathe. But he kept saying "your titration study was flawless. I'm not upping your pressure."

So I stayed at the same pressure for 8 months, and felt no better at all. Finally, I found CPAPtalk.com and learned about the existence of Auto-adjusting machines. My sleep doc (the one that read my sleep study and refused to up my pressure) refused to prescribe me one. He said that autos didn't work, and that they only responded to apneas AFTERwards, and so did no one any good at all. I showed him several studies published in NEJM and JAMA and the like proving that autos are quite beneficial, and, showing that, while they originally were questionable in the way they worked when they first came out, they had been updated and improved so much that patients oftentimes did better on them than they did in having a lab titration study and put on straight CPAP. He still refused to even consider it. So I went to my GP back home, who wrote me an RX for an auto machine then and there. I took my used CPAP to the DME, gave them the new RX, and traded it for my brand new auto.

The auto showed that (surprise, surprise) I had been BADLY undertitrated. I actually require a pressure of 11 to keep my airway open. I was titrated at 6. In CPAP pressure, that's a HUGE difference. Ever since I found my auto, and found the mask that actually lets me sleep comfortably, I'm doing SO much better. Ironically, and not surprisingly, when my GP asked my sleep doc for a copy of my titration study, that study had mysteriously "disappeared." Sometimes the best thing we can do is make sure we're in charge of our own health, and not let our doctors take over the reins entirely. Doctors are human, too. Just MHO.

[imfree]

LOLOLO..... I don't know about pretty, but I do live in Ohio.... and FREE???? I think I missed that train... LOLOL

Hey, as skeptical as I am about this, I'm holding faith that it will work for me...eventually. Everyone is different. I keep expecting overnight results...for me, it just take a little longer. I'm just hanging in there until I have my "Oprah - full circle moment".... it'll happen....


Besides... I may be pretty, but I think you are beautiful...so you've got me beat!!
Hahaha!!!, don't know about pretty?, try "drop-dead gorgeous",
:smitten: then, Violet!!!
Laughing Too
Hard To Type,
Edgar

[Les Toil]

Sometimes during the night my sweety's CPAP mask will reposition itself causing that loud "WHOOSH" sound in addition to her snoring. I'm torn between waking her so she can readjust the mask and not bothering her so she can continue to sleep while I put ear plugs in. When I tell her in the morning her mask was slipping slightly during the night, she insists I wake her and tell her so she can sleep properly. It's just that when I wake her to tell her, she's startled and grumpy and it gives me the imprerssion I've interrupted her sleep. And the poor woman has purchased numerous masks hoping there'll be one that stays in place.

[-X-]

Sorry to hear that Les Toil, but thanks for all the information and experiences thus far. Sorry I wasn't able to respond sooner.

[BigBeautifulMe]

Sorry to hear she's having so much trouble, Les. :( But the snoring thing is not good. CPAP should be STOPPING her snoring entirely. If she's snoring, it means either her pressure isn't high enough, or (if she uses a nasal mask) she's mouth-breathing. If she's mouth-breathing, she's losing that pressurized air from her mouth, and so it's not getting into her airway to keep that airway open. That's definitely not good. She'll need a full face mask.

If she already has a full face mask and she's still snoring, that means her pressure isn't high enough, and she needs to talk to her doc.

[Violet_Beauregard]

WOW!!! Well, you definitely were smart to educate yourself and it has paid off. I hope I do half as well as you. They set my titration at 7 and I think that's OK. My boss is at 10. I'll see how it goes tonight.



Nope, I'm not a medical professional - just a good researcher. I pretty much had to be. I got stuck with an incompetent doctor and DME. My treatment got off to a very rocky start, thanks to that.

I didn't sleep well during either of my studies (I had two, too by the way - they didn't get enough data during the first four hours of the first study to just hook me up to a CPAP then and there). I kept telling the tech I didn't sleep at all, but he kept saying 'your brain waves don't lie. you slept just fine.' When they titrated me - same thing. So when i got my machine, I used it all night, ever night from day 1. I was determined that I was going to let this thing help me. But I kept feeling suffocated. I kept telling the doc I didn't think my pressure was high enough - I couldn't breathe. But he kept saying "your titration study was flawless. I'm not upping your pressure."

So I stayed at the same pressure for 8 months, and felt no better at all. Finally, I found CPAPtalk.com and learned about the existence of Auto-adjusting machines. My sleep doc (the one that read my sleep study and refused to up my pressure) refused to prescribe me one. He said that autos didn't work, and that they only responded to apneas AFTERwards, and so did no one any good at all. I showed him several studies published in NEJM and JAMA and the like proving that autos are quite beneficial, and, showing that, while they originally were questionable in the way they worked when they first came out, they had been updated and improved so much that patients oftentimes did better on them than they did in having a lab titration study and put on straight CPAP. He still refused to even consider it. So I went to my GP back home, who wrote me an RX for an auto machine then and there. I took my used CPAP to the DME, gave them the new RX, and traded it for my brand new auto.

The auto showed that (surprise, surprise) I had been BADLY undertitrated. I actually require a pressure of 11 to keep my airway open. I was titrated at 6. In CPAP pressure, that's a HUGE difference. Ever since I found my auto, and found the mask that actually lets me sleep comfortably, I'm doing SO much better. Ironically, and not surprisingly, when my GP asked my sleep doc for a copy of my titration study, that study had mysteriously "disappeared." Sometimes the best thing we can do is make sure we're in charge of our own health, and not let our doctors take over the reins entirely. Doctors are human, too. Just MHO.

[Violet_Beauregard]

Edgar, you're fast becoming my biggest fan, I think..... :)

Thank you for the lovely things you say......




Hahaha!!!, don't know about pretty?, try "drop-dead gorgeous",
:smitten: then, Violet!!!
Laughing Too
Hard To Type,
Edgar

[imfree]

Edgar, you're fast becoming my biggest fan, I think..... :)

Thank you for the lovely things you say......
You're very much welcome, Violet. Think about it, though, at 400lbs, I
could easily be your biggest AND heaviest fan. 400lbs of love is a lot!!!
HUGGZZ and Loving
Thoughts,
Edgar

[Violet_Beauregard]

LOL... You're right about that!! :)



You're very much welcome, Violet. Think about it, though, at 400lbs, I
could easily be your biggest AND heaviest fan. 400lbs of love is a lot!!!
HUGGZZ and Loving
Thoughts,
Edgar

[imfree]

LOL... You're right about that!! :)
Think of it this way, though. I'm not your average muscle and bones
man, I am a most luxurious hug and cuddle.................. Bad boy, stop that!!!
Real HUGGZZ,
Come Get 'em,
Edgar

[Violet_Beauregard]

Well, Day 4... a little better. Not so much discomfort while sleeping last night. I think I'm getting used to it. I'm not dragging AS MUCH when I wake up, so I think I'm getting there. :D

[BigBeautifulMe]

That's EXCELLENT news, Vi! Congratulations! :D

[imfree]

That's EXCELLENT news, Vi! Congratulations! :D
I'll echo that with a hearty AMEN!
HUGGZZ,
Edgar

[imfree]

Originally Posted by Friend
I only have sleep apnea when BBMe sits on my face. Do I still need CPAP?

Hahaha!!!, my BiPAP works great, but I have episodes of apnea
when I'm dreaming about Violet, does my machine's software need to be
updated?
Breathless,
Edgar

[Violet_Beauregard]

Yep, I'm encouraged. I think with time, it will improve.

Thanks so much for the good wishes...they're so helpful!



That's EXCELLENT news, Vi! Congratulations! :D

I'll echo that with a hearty AMEN!
HUGGZZ,
Edgar

[Violet_Beauregard]

Edgar you better get that checked..... LOLOL



Originally Posted by Friend
I only have sleep apnea when BBMe sits on my face. Do I still need CPAP?

Hahaha!!!, my BiPAP works great, but I have episodes of apnea
when I'm dreaming about Violet, does my machine's software need to be
updated?
Breathless,
Edgar

[Zandoz]

Are these things expensive? Does insurance cover them? Sounds like a big deal.


It depends on if you are an insurance company or not. To buy one on your own, there are many excellent machines out there for under a grand. But when the insurance companies get involved the price frequently triples or quadruples. For that reason, many insurance companies throw up a lot of roadblocks for any kind of sleep testing/treatment/equipment. Ten years ago it took almost a year of hassles, and a false start with one supposedly approved sleep clinic that was later rejected by the insurance company. With both my original CPAP and later my BiPAP, rather than the insurance paying for the machine outright I had to go through a year of kind of a "rent to own" situation...for the first year, I had to pay a monthly rent on the machine (If I remember right the last one was $63 per month) then at the end of the year, the insurance company bought it for the grossly inflated price.

Last fall, I noticed my BiPAP was beyond it's hours of life expectancy, so I started checking into what the hassles were going to be to replace it. I'd hoped that things had smoothed out in the last 6 years...no such luck. It will still cost me almost as much in a years worth of rent to own payments, before the insurance will kick in, than it will for me to buy it outright myself. :( At this point I've resigned myself to just having to take a credit card hit and buy a better machine myself, than go through the insurance hassles to get a bottom-of-the-line machine.

[LillyBBBW]

It depends on if you are an insurance company or not. To buy one on your own, there are many excellent machines out there for under a grand. But when the insurance companies get involved the price frequently triples or quadruples. For that reason, many insurance companies throw up a lot of roadblocks for any kind of sleep testing/treatment/equipment. Ten years ago it took almost a year of hassles, and a false start with one supposedly approved sleep clinic that was later rejected by the insurance company. With both my original CPAP and later my BiPAP, rather than the insurance paying for the machine outright I had to go through a year of kind of a "rent to own" situation...for the first year, I had to pay a monthly rent on the machine (If I remember right the last one was $63 per month) then at the end of the year, the insurance company bought it for the grossly inflated price.

Last fall, I noticed my BiPAP was beyond it's hours of life expectancy, so I started checking into what the hassles were going to be to replace it. I'd hoped that things had smoothed out in the last 6 years...no such luck. It will still cost me almost as much in a years worth of rent to own payments, before the insurance will kick in, than it will for me to buy it outright myself. :( At this point I've resigned myself to just having to take a credit card hit and buy a better machine myself, than go through the insurance hassles to get a bottom-of-the-line machine.

Thanks everybody for the information and advice, it has been really helpful and encouraging. In case anybody is keeping score I finally made my appointment for a consultation. It's not till March 30, plenty of time for me watch and write notable stuff down to tell the doctors. They may say, "Nah, you're not one of us," and then I'm free to go but at least I've got it out of the way. Thanks again.

[MissToodles]

I know I should really go for a study but in the meanwhile here it is:

According to my boyfriend, I don't snore at night but rather breathe quite loudly but never gasp for air or stop breathing. I know I have terrible short term memory, can't remember for the life of me small things and an hour later will remember but that could be the hashimoto's and being unmedicated. Do all apena sufferers snore ?

[LillyBBBW]

I know I should really go for a study but in the meanwhile here it is:

According to my boyfriend, I don't snore at night but rather breathe quite loudly but never gasp for air or stop breathing. I know I have terrible short term memory, can't remember for the life of me small things and an hour later will remember but that could be the hashimoto's and being unmedicated. Do all apena sufferers snore ?

That's a good question Miss T. I too have the same issue. I am exhausted all day and I don't snore, only on my back. Last night just for shits and giggles I took allergy meds, decongestant and rinsed with a saline nasal spray to see if maybe breathing easier improves my sleep and danged if I don't feel better today and actually woke up and made it to work on time. Might just be simple allergies and not apnea but it's at least an idea for you to toss around with the other stuff you've been looking at.

[Violet_Beauregard]

Wise decision Lilly. At least you'll know one way or the other!


Thanks everybody for the information and advice, it has been really helpful and encouraging. In case anybody is keeping score I finally made my appointment for a consultation. It's not till March 30, plenty of time for me watch and write notable stuff down to tell the doctors. They may say, "Nah, you're not one of us," and then I'm free to go but at least I've got it out of the way. Thanks again.

[BigBeautifulMe]

For MissToodles and Lilly, and anyone else who doesn't snore but think they might have apnea:

http://www.cpaptalk.com/viewtopic/t13698/Any-non-snorers-with-obstructive-sleep-apnea.html

a great link that discusses thins. Not all apneacs snore, and not all snorers have apnea. :) Hope that helps.

[Miss Vickie]

My boss uses a CPAP and he claimed he felt 100% better the following morning. I also saw an episode of The View where Rosie O'Donnell now uses a CPAP and she felt better the first day as well.

I didn't expect perfection, but geez....for all the grief I thought it would be different. I'm not jazzed in the least about using this thing, but if I have to I will. I know it will take some time to get into a regular routine, and I expect it will get better, but everything I've heard has been instantaneous results.

Anyone else use a CPAP? What were your results after once use? What can I expect after regular use?

Thanks!!! :)

I'm the wife of a CPAP user. After MONTHS of suffering, on both our parts (his with loss of energy, poorly controlled hypertension, daytime sleepiness, etc and mine a total lack of sleep because of his snoring) my sweetie finally got a sleep study and not surprisingly was diagnosed with severe sleep apnea. His oxygen saturation got down to 68% and he had 200+ episodes of apnea before they woke him and fitted him with a mask. He slept the rest of the night while they titrated his pressures, and has slept with a CPAP since.

It wasn't like a light switch. That may be true for some, but I think if it's a long term problem, it will take awhile to get used to it and gain the benefits from it. It took a couple of weeks for him to really notice a difference in energy level, and for his hypertension to ease; however, he is a great patient and is totally compliant, and he's doing very well. They switched him from a mask to nasal pillows after a couple of weeks and he's doing much better; the nasal mask gave him a sore on the top of his nose so the pillows are an improvement. He has a brand new kind, wish I knew the name of it, but it's literally brand new, and he likes it a lot.

Did they give you Ambien to help you sleep while you're getting used to the machine? He's weaning himself off of it now, but it helped TREMENDOUSLY in the first few weeks.

Also, there are many many many systems out there. Full face masks, nasal masks, nasal pillows, and several kinds of each. There's also the size issue; it's important that your nasal pillows fit well, as BBMe said. They shouldn't go up your nose but rest at the nasal opening. We've found that they real key to success with a CPAP machine is having a good group who will help you with trial and error until you find the right set up for YOU. It's such an individual thing that it seems really rare to find the perfect fit the first time out, but it's SOOOOO worth going to the effort of continuing to look for what works. At the sleep clinic Burtimus went to, they give you a 30 day guarantee; you have 30 days to try out a new system and if you return it before those 30 days are over, they'll swap out a new one for you. It's been (literally) a life saver.

You're welcome, Vi. :) I'm glad you didn't give up last night. A lot of CPAP users I know use one of two bed pillows - either the "Shapeable Pillow" from Target, or the PAPillow from talkaboutsleep.com. The Shapeable Pillow is like a normal pillow, but can be shaped/molded, and will stay in that position. You can shape it so that it doesn't put pressure on the nasal pillows, and then sleep with it like that. The PAPillow is kind of T-shaped, with "holes" cut into the sides so that you can support your head, but, again, not put pressure on the mask.

Thanks for this information. I think Burtimus needs a different pillow. His only real complaint about the machine now is that the way the hose comes off, he has to adjust it at night. I think a different pillow would help.

ETA: Forgot to mention that hanging the hose above your bed can be very helpful in keeping the mask from getting tugged around by the hose all night. It really does help with comfort, and you won't get tangled up in the hose, or keep rolling over on the hose when you toss and turn. Here's a great resource for reading about different ways to do that: http://www.cpaptalk.com/viewtopic.php?t=10640
I personally use the 3M cord bundler. It's one of those "command hooks" you put on the wall and can take down without damaging it. It isn't a traditional "hook shape," and it holds the hose just perfectly. For people who dont' have a headboard to help them in hanging the hose, it really works quite well. I like it because I can take it down and take it on trips with me. :)

If you want any more reading on these topics (as well as some reading on "fixes" other users have applied to the Swift, let me know and I can point you in the right directions. There is SO much information out there. :D

This is great information, thank you. My sweetie hangs his hose over the headboard of our bed and it works great. I'll definitely send him this information, in case he wants to tweak his set up.

Sometimes during the night my sweety's CPAP mask will reposition itself causing that loud "WHOOSH" sound in addition to her snoring. I'm torn between waking her so she can readjust the mask and not bothering her so she can continue to sleep while I put ear plugs in. When I tell her in the morning her mask was slipping slightly during the night, she insists I wake her and tell her so she can sleep properly. It's just that when I wake her to tell her, she's startled and grumpy and it gives me the imprerssion I've interrupted her sleep. And the poor woman has purchased numerous masks hoping there'll be one that stays in place.

Les, you definitely need to wake her up and get her to readjust her mask. And yes, if she's still snoring then it's not working. Either her pressure isn't high enough or she's not well fitted enough. She should keep talking to her sleep specialist to find one that WORKS.

Well, Day 4... a little better. Not so much discomfort while sleeping last night. I think I'm getting used to it. I'm not dragging AS MUCH when I wake up, so I think I'm getting there. :D

Yay for good news, Vi. I've not had anyone say it wasn't worth it, once they got used to it. I'm glad to hear you're doing better. And yes, if you have trouble with your setup go see the people who gave you the machine and have them help you find the right kind. Trial and error is normal, but you need the support to find a good set up for YOU.

I have to tell you that in our case, it's worked wonders. Burtimus is working out more, he's got lots more energy, is in a better mood, and his blood pressure is much better. The change has been remarkable.

[Violet_Beauregard]

Thanks so much for the encouragement! I am getting more used to the nasal pillows. The plastic smell is kind of annoying, but I'm getting there.



I'm the wife of a CPAP user. After MONTHS of suffering, on both our parts (his with loss of energy, poorly controlled hypertension, daytime sleepiness, etc and mine a total lack of sleep because of his snoring) my sweetie finally got a sleep study and not surprisingly was diagnosed with severe sleep apnea. His oxygen saturation got down to 68% and he had 200+ episodes of apnea before they woke him and fitted him with a mask. He slept the rest of the night while they titrated his pressures, and has slept with a CPAP since.

It wasn't like a light switch. That may be true for some, but I think if it's a long term problem, it will take awhile to get used to it and gain the benefits from it. It took a couple of weeks for him to really notice a difference in energy level, and for his hypertension to ease; however, he is a great patient and is totally compliant, and he's doing very well. They switched him from a mask to nasal pillows after a couple of weeks and he's doing much better; the nasal mask gave him a sore on the top of his nose so the pillows are an improvement. He has a brand new kind, wish I knew the name of it, but it's literally brand new, and he likes it a lot.

Did they give you Ambien to help you sleep while you're getting used to the machine? He's weaning himself off of it now, but it helped TREMENDOUSLY in the first few weeks.

Also, there are many many many systems out there. Full face masks, nasal masks, nasal pillows, and several kinds of each. There's also the size issue; it's important that your nasal pillows fit well, as BBMe said. They shouldn't go up your nose but rest at the nasal opening. We've found that they real key to success with a CPAP machine is having a good group who will help you with trial and error until you find the right set up for YOU. It's such an individual thing that it seems really rare to find the perfect fit the first time out, but it's SOOOOO worth going to the effort of continuing to look for what works. At the sleep clinic Burtimus went to, they give you a 30 day guarantee; you have 30 days to try out a new system and if you return it before those 30 days are over, they'll swap out a new one for you. It's been (literally) a life saver.

[Violet_Beauregard]

Well.... it seemed this morning it was a LITTLE easier waking up. I am getting more used to the nasal pillows...though the plastic smell is still kind of annoying!! LOL I like the ramping feature. It prevents the feeling of getting blasted with air right away. I think generally I'm getting more used to it. I'm hoping this will continue. I still am having problems with the "vanity" end of things. This is the one and ONLY time I'll say I'm glad I don't have a boyfriend sleeping over. I would HATE him seeing me wear this awful thing! LOL :doh:

[imfree]

Hahaha!!!, Violet, you need a boyfriend or husband that uses a CPAP or BiPAP, too. I visualize a bed with a nice tall headboard that has two outlets and two demand hooks on a shelf at the top of the headboard. I am somewhat of an engineering type rascal!
The Most
Adaptable,
Edgar

[LillyBBBW]

Well.... it seemed this morning it was a LITTLE easier waking up. I am getting more used to the nasal pillows...though the plastic smell is still kind of annoying!! LOL I like the ramping feature. It prevents the feeling of getting blasted with air right away. I think generally I'm getting more used to it. I'm hoping this will continue. I still am having problems with the "vanity" end of things. This is the one and ONLY time I'll say I'm glad I don't have a boyfriend sleeping over. I would HATE him seeing me wear this awful thing! LOL :doh:

If I was with someone I really cared about and the doctors told him that he had to sleep with a live turkey dangling from his ankle I'd tie the knot myself Vi. I wouldn't let it bother you, not many people will care. They know it's just something you have to do.

EDIT: 'specially if he was cute and from Ohio. :p

[Violet_Beauregard]

Weeelllll, I suppose you're right there..... if he really cares, it won't much matter.... now, to just find that cute guy from Ohio... :)


If I was with someone I really cared about and the doctors told him that he had to sleep with a live turkey dangling from his ankle I'd tie the knot myself Vi. I wouldn't let it bother you, not many people will care. They know it's just something you have to do.

EDIT: 'specially if he was cute and from Ohio. :p

[imfree]

If I was with someone I really cared about and the doctors told him that he had to sleep with a live turkey dangling from his ankle I'd tie the knot myself Vi. I wouldn't let it bother you, not many people will care. They know it's just something you have to do.

EDIT: 'specially if he was cute and from Ohio. :p
Hi Lilly, the proverb says "true love does not think of self". You are
such a woman! I LOVE the way you stated it!!! May GOD richly bless you.
You Touched
My Heart,
Edgar

[Violet_Beauregard]

Well, I was able to sleep in this morning (no work), so I wore the mask for a full 8 hours. I felt pretty good. I woke up, took it off...then laid back down for a little while, fell back asleep and woke up miserable. I felt sluggish. Obviously the CPAP is making some difference.

I'm still getting used to wearing it, but it is getting better.

[imfree]

Hang in there, Violet, you're already doing GREAT! Some people can
take breathing for granted. Profound improvements have been in my life since I
took a multi-phased, pro-active stance toward my breathing, I am able to per-
form physical activities that I thought would never be possible again!!!
Blazing With
Life,
Edgar

[Violet_Beauregard]

Yes, Edgar, I do think I'm getting there.

[imfree]

Weeelllll, I suppose you're right there..... if he really cares, it won't much matter.... now, to just find that cute guy from Ohio... :)
Hahaha!!!, I wouldn't feel intimidated to have bed-partner who uses
a CPAP, no, not at all. Before I got my BIPAP, I snored so loudly that no one
could even sleep in the neighborhood around me!
The Silenced
Chain-Saw Snorer,
Edgar

[Zandoz]

Thanks everybody for the information and advice, it has been really helpful and encouraging. In case anybody is keeping score I finally made my appointment for a consultation. It's not till March 30, plenty of time for me watch and write notable stuff down to tell the doctors. They may say, "Nah, you're not one of us," and then I'm free to go but at least I've got it out of the way. Thanks again.

Lilly, you're definitely on the right path...if there's any question, get checked. There really is no down side. If you do have apnea, it's the first step to dealing with it...if it turns out you do not, you get peace of mind...always a valuable commodity.

[Zandoz]

Well.... it seemed this morning it was a LITTLE easier waking up. I am getting more used to the nasal pillows...though the plastic smell is still kind of annoying!! LOL I like the ramping feature. It prevents the feeling of getting blasted with air right away. I think generally I'm getting more used to it. I'm hoping this will continue. I still am having problems with the "vanity" end of things. This is the one and ONLY time I'll say I'm glad I don't have a boyfriend sleeping over. I would HATE him seeing me wear this awful thing! LOL :doh:


The plastic smell you're experiencing has me puzzled. With all the masks and hoses I've used over the years, I've never had that problem. One odor problem I have encountered, both with my own equipment and one of the sleep center's equipment, is an occasional burnt wood kind of smell. I've attributed it to using tap water instead of distilled for the humidifier.

On the vanity issue, look at it this way...if the person really cares about YOU, what you are wearing, especialy when what you are wearing is important to your well beiing, will not matter.

[Violet_Beauregard]

The smell isn't as bad. I don't have the humidifier yet, so that may help.

And you are right about the vanity thing. Hopefully it won't matter! That would be IF I ever find "Mr. Right"...... LOLOL


The plastic smell you're experiencing has me puzzled. With all the masks and hoses I've used over the years, I've never had that problem. One odor problem I have encountered, both with my own equipment and one of the sleep center's equipment, is an occasional burnt wood kind of smell. I've attributed it to using tap water instead of distilled for the humidifier.

On the vanity issue, look at it this way...if the person really cares about YOU, what you are wearing, especialy when what you are wearing is important to your well beiing, will not matter.

[Violet_Beauregard]

Very sore nose this morning... don't really know why. Right around the edges... kind of annoying, actually.... I have to admit, I'm feeling pretty good though, at 8:20 tonight. I had an active day today, and normally by now, I'd be whipped. Tonight I feel pretty good....

Gee, maybe there IS something to this CPAP thing..... LOLOL :)

[imfree]

Well, that's how we say it down here in Mid-Tn. You're begining to feel the difference the improved breathing makes. Mine was so bad that I was falling asleep at the wheel.
I really do think you're adorable, too.
HUGGZZ,
Edgar

[Violet_Beauregard]

I do think you might be right about finally feeling some effects. Tonight it will be a solid week of using it. We'll see how another solid week does. Fortunately I've never fallen asleep at the wheel, but I do doze off at work! LOL

I am pretty adorable, aren't I?? LOLOL


Well, that's how we say it down here in Mid-Tn. You're begining to feel the difference the improved breathing makes. Mine was so bad that I was falling asleep at the wheel.
I really do think you're adorable, too.
HUGGZZ,
Edgar

[imfree]

You ARE adorable, Violet!, I just didn't expect you to believe me
this quickly. Oh well. some lucky guy will end up with you and I'll have
the pleasure of knowing I contributed to your happiness!
Between A Laugh
And A Tear,
HUGGZZ,
Edgar

[Violet_Beauregard]

I probably don't really believe it yet.... I just had a good night tonight! I'm "feeling my oats" so-to-speak. Tomorrow morning I'll be back on the "I'm a loser" band wagon! I'll just be awake (thanks to my new CPAP) to think it! LOLOL

:) Thanks darlin'..... :)



You ARE adorable, Violet!, I just didn't expect you to believe me
this quickly. Oh well. some lucky guy will end up with you and I'll have
the pleasure of knowing I contributed to your happiness!
Between A Laugh
And A Tear,
HUGGZZ,
Edgar

[Violet_Beauregard]

Eh... that's how I'm feeling today. Very tired...very sore. I had a big day yesterday...lots of walking in heels, lots of tension and being keyed up. I had trouble sleeping last night and trouble waking today. I don't think the CPAP had anything to do with it. I think it was me. I'm hoping tonight will be better.

[imfree]

Eh... that's how I'm feeling today. Very tired...very sore. I had a big day yesterday...lots of walking in heels, lots of tension and being keyed up. I had trouble sleeping last night and trouble waking today. I don't think the CPAP had anything to do with it. I think it was me. I'm hoping tonight will be better.
Sorry, Violet, all I can give you is verbal HUGGZZ, verbal cuddles, and
verbal shoulder massages. Sounds to me, though, real ones would hit the spot.
My bad day today was all mental, trying to fix earthlink, they failed to fix it, receiving the new DSL modem from bellsouth and having a world of hurt getting the new service to work. Mom and I went for a bundled-package from Bellsouth and the modem wasn't scheduled to arrive until Friday. I can't wait to tell earthlink where to go, hahaha!
I Pray Comfort
And Peace For
You,
Edgar

[Violet_Beauregard]

Thanks Edgar.... I'm hoping that tonight I'll be so exhausted I'll pass right out! (mask and all... LOL).

Good luck with the modem. It'll work out. It will just test your patience in the process.

Vi


Sorry, Violet, all I can give you is verbal HUGGZZ, verbal cuddles, and
verbal shoulder massages. Sounds to me, though, real ones would hit the spot.
My bad day today was all mental, trying to fix earthlink, they failed to fix it, receiving the new DSL modem from bellsouth and having a world of hurt getting the new service to work. Mom and I went for a bundled-package from Bellsouth and the modem wasn't scheduled to arrive until Friday. I can't wait to tell earthlink where to go, hahaha!
I Pray Comfort
And Peace For
You,
Edgar

[imfree]

Thanks Edgar.... I'm hoping that tonight I'll be so exhausted I'll pass right out! (mask and all... LOL).

Good luck with the modem. It'll work out. It will just test your patience in the process.

Vi
Hahaha!!!, Violet, not only is BellSouth working great, but I've cancelled Earthlink and won't be billed again! I'm pretty sure the Earthlink modem failed, my second Earthlink modem failure in the 13 months I had DSL service through them.
Hahaha!!!, Violet, as far as sleep goes, I give really soft, warm, squooshy HUGGZZ and cuddles, you probably wouldn't have too much trouble falling asleep im my arms........whoops!!!!..........BAD BOY, STOP THAT!!!
Sweet Dreams,
Edgar

[Happy FA]

One of the most amazing things about having sleep apnea is that you're tired all the time, except of course when you're thinking of going to bed in the evening. So, when you find that you have apnea and then begin to treat it with a CPAP or other wind machine you now discover that your body has flavors of feeling tired, rested, full of energy and everything in between.

It is very easy to take the view that if you're feeling tired or run down, after you've gotten your cpap machine that it is the machine that's not working, or you're breathing through your mouth, or some other treatment issue. However, this isn't always the case. While the CPAP can be a magic bullet to make the effects of the apnea disappear and recapture your life, this is only part of the problem.

Sleep like so many other areas of our life includes two components, quality and quantity. The CPAP only deals with the quality of the sleep you're getting. It doesn't deal with the quantity that you're receiving. Sometimes, the problem isn't the quality of the sleep, but how much of it you're getting.

Thinking back to my college days, long before I had apnea, I used to pull all-nighters on a regular basis, usually for school work procrastinated to the last minute, but once just to learn how to flick a beer bottle cap across a room with accuracy with a snap of my thumb and middle finger. Usually, a day or two of all nighters would leave me in a weird mood until I made up the sleep debt.

So, if you're a CPAP newbie and you're feeling really tired and wondering whether the problem is the treatment side, stop and think about what sort of physical and mental demands you've been putting on your body(with the new found energy and mental focus of a rested body/mind you tend to feel so good you overdo things to start), and the number of hours of sleep you've gotten. The answer may just be a matter of sleeping for an extra hour or two.

[Violet_Beauregard]

Excellent points and definitely something to think about. I have been burning the candle at both ends for a while, for an event that took place on Sunday. Perhaps now that I can relax, I'll be able to make the most of the advantages of the CPAP.

Thanks for the info!!


One of the most amazing things about having sleep apnea is that you're tired all the time, except of course when you're thinking of going to bed in the evening. So, when you find that you have apnea and then begin to treat it with a CPAP or other wind machine you now discover that your body has flavors of feeling tired, rested, full of energy and everything in between.

It is very easy to take the view that if you're feeling tired or run down, after you've gotten your cpap machine that it is the machine that's not working, or you're breathing through your mouth, or some other treatment issue. However, this isn't always the case. While the CPAP can be a magic bullet to make the effects of the apnea disappear and recapture your life, this is only part of the problem.

Sleep like so many other areas of our life includes two components, quality and quantity. The CPAP only deals with the quality of the sleep you're getting. It doesn't deal with the quantity that you're receiving. Sometimes, the problem isn't the quality of the sleep, but how much of it you're getting.

Thinking back to my college days, long before I had apnea, I used to pull all-nighters on a regular basis, usually for school work procrastinated to the last minute, but once just to learn how to flick a beer bottle cap across a room with accuracy with a snap of my thumb and middle finger. Usually, a day or two of all nighters would leave me in a weird mood until I made up the sleep debt.

So, if you're a CPAP newbie and you're feeling really tired and wondering whether the problem is the treatment side, stop and think about what sort of physical and mental demands you've been putting on your body(with the new found energy and mental focus of a rested body/mind you tend to feel so good you overdo things to start), and the number of hours of sleep you've gotten. The answer may just be a matter of sleeping for an extra hour or two.

[Violet_Beauregard]

Edgar, Edgar, Edgar....what am I going to do with you???

LOL :)


Hahaha!!!, Violet, not only is BellSouth working great, but I've cancelled Earthlink and won't be billed again! I'm pretty sure the Earthlink modem failed, my second Earthlink modem failure in the 13 months I had DSL service through them.
Hahaha!!!, Violet, as far as sleep goes, I give really soft, warm, squooshy HUGGZZ and cuddles, you probably wouldn't have too much trouble falling asleep im my arms........whoops!!!!..........BAD BOY, STOP THAT!!!
Sweet Dreams,
Edgar

[imfree]

Edgar, Edgar, Edgar....what am I going to do with you???

LOL :)
Like the baby dinosaur in the 90's series said, "gotta' love me"!!!,
of course!!! I strive to be a delightful "nut-case"!
May You Laugh
As Much As I Do,
Edgar

[Violet_Beauregard]

Remember, you said it, not me!!

;)



Like the baby dinosaur in the 90's series said, "gotta' love me"!!!,
of course!!! I strive to be a delightful "nut-case"!
May You Laugh
As Much As I Do,
Edgar

[imfree]

[QUOTE=Violet_Beauregard;369878]Remember, you said it, not me!!

;)[/QUOTE

Yep, I'm a "nut-case", alright, but, somehow, I think you kind'a
like me that way. You're just fun to play with online and I like you:smitten: .
HUGGZZ,
Edgar

[Violet_Beauregard]

CPAP is.... OK...... I'm still hanging in there. I'm getting more used to it I think. My nose is incredibly sore, but I think I'll just have to learn to live with that. My energy level is up a little, though last evening I was fighting to stay awake in front of the TV. I still wake up several times at night, I'm not sure what might be causing that. Over all, the whole thing is tolerable.

[Violet_Beauregard]

Yeah, I like you kinda nutty.... you're not so bad.... ;)


Yep, I'm a "nut-case", alright, but, somehow, I think you kind'a
like me that way. You're just fun to play with online and I like you:smitten: .
HUGGZZ,
Edgar

[imfree]

Yeah, I like you kinda nutty.... you're not so bad.... ;)
Sounds to me that once you're past the sore nose, you'll be pretty well-adjusted to using the CPAP. Because your apnea is mild, it seems that it's OK for your short-term improvement to be modest. In the long run, you'll have better blood-pressure and heart-health. I'm sure even the modest improvement in energy level is welcome.
You're sweet, fun to interact with online, and I could
probably really love you if you need me.:happy: :kiss2: :smitten: :batting: :happy:
HUGGZZ And Cuddles,
Edgar

[Violet_Beauregard]

At this point a modest improvement in energy is better than none. I'm hoping with some long-term use, I'll see more results over the next few months.

Edgar, you're sweet too, and I love teasing with you.... I can always enjoy that! ;) :batting:


Sounds to me that once you're past the sore nose, you'll be pretty well-adjusted to using the CPAP. Because your apnea is mild, it seems that it's OK for your short-term improvement to be modest. In the long run, you'll have better blood-pressure and heart-health. I'm sure even the modest improvement in energy level is welcome.
You're sweet, fun to interact with online, and I could
probably really love you if you need me.:happy: :kiss2: :smitten: :batting: :happy:
HUGGZZ And Cuddles,
Edgar

[imfree]

At this point a modest improvement in energy is better than none. I'm hoping with some long-term use, I'll see more results over the next few months.

Edgar, you're sweet too, and I love teasing with you.... I can always enjoy that! ;) :batting:
Yep, Violet, you're BOTH fun AND adorable, ohhhh, what am
I going to do?
HUGGZZ
And Grinz,
Edgar

[Violet_Beauregard]

What are you going to do? Keep worshiping and adoring me, that's what!!



Yep, Violet, you're BOTH fun AND adorable, ohhhh, what am
I going to do?
HUGGZZ
And Grinz,
Edgar

[imfree]

What are you going to do? Keep worshiping and adoring me, that's what!!
Sorry, Violet, I worship Christ. You REALLY are cute, and oh-so adorable. Can you accept being number one on Earth and let HIM be master of the universe? We can all take our proper place and be happy within that framework.
HUGGZZ n Cuddles,
Edgar

[Violet_Beauregard]

I'll concede to that, providing that you constantly remind me how wonderful I really am.... LOLOL :)


Sorry, Violet, I worship Christ. You REALLY are cute, and oh-so adorable. Can you accept being number one on Earth and let HIM be master of the universe? We can all take our proper place and be happy within that framework.
HUGGZZ n Cuddles,
Edgar

[Violet_Beauregard]

Back on topic.... my CPAP..... can anyone suggest something for my nose? I use the nasal air pillows and the edges of my nose are so raw... It's like I have a cold and I've been blowing for a week straight.... ugh.

BBMe...you're my resident expert.... any thoughts??

[imfree]

I'll concede to that, providing that you constantly remind me how wonderful I really am.... LOLOL :)
Violet, you've more than earned my continuing reminders that you
are wonderful, sweet. adorable, and certainly, most loveable. Email Dr
TJ about the nasal soreness. She lovelingly shares simple and inexpen-
sive solutions for such problems.
HUGGZZ,
Edgar

[Violet_Beauregard]

Thanks Edgar!

Edgar you use a BiPAP...what's the difference between a CPAP and BiPAP?





Violet, you've more than earned my continuing reminders that you
are wonderful, sweet. adorable, and certainly, most loveable. Email Dr
TJ about the nasal soreness. She lovelingly shares simple and inexpen-
sive solutions for such problems.
HUGGZZ,
Edgar

[imfree]

Thanks Edgar!

Edgar you use a BiPAP...what's the difference between a CPAP and BiPAP?
Well Violet, the BiPAP, near as I can remember, has digitally controlled bi-level air pressure. One poster said that some BiPAPs could
"breathe" for a person with central sleep-apnea. Perhaps bi-level air pressure could encourage a person to resume breathing in an apnea episode.
About 10 years ago, my ex shook me awake violently one Saturday
morning and told me I hadn't breathed for almost 2 minutes.
Alive To Tell
& Give HUGGZ,
Edgar
*I have apnea episodes when I'm dreaming
about Violet, do I need a BiPAP?

[Violet_Beauregard]

Does it hook up to oxygen as opposed to regular air? Maybe it senses the apena and forces the air to stop it? I was curious about the difference. Obviously my apnea isn't that severe, I just wondered what the difference was.

Thanks for the education!



Well Violet, the BiPAP, near as I can remember, has digitally controlled bi-level air pressure. One poster said that some BiPAPs could
"breathe" for a person with central sleep-apnea. Perhaps bi-level air pressure could encourage a person to resume breathing in an apnea episode.
About 10 years ago, my ex shook me awake violently one Saturday
morning and told me I hadn't breathed for almost 2 minutes.
Alive To Tell
& Give HUGGZ,
Edgar
*I have apnea episodes when I'm dreaming
about Violet, do I need a BiPAP?

[imfree]

Does it hook up to oxygen as opposed to regular air? Maybe it senses the apena and forces the air to stop it? I was curious about the difference. Obviously my apnea isn't that severe, I just wondered what the difference was.

Thanks for the education!
Hi Violet, my BiPaP has a "tee" in the big hose that goes to the mask. The tee connects at the machine's outlet fitting and allows a 1/4" oxygen line
to mix oxygen with normal air as it comes out of the machine. I use 4 liters per minute at night on the BiPAP. I use 2 liters-per minute of oxygen during the day. At home, I use an oxygen concentrator, a 50lb machine that extracts oxygen from normal air. It has a compressor that pressureizes air, then a filter that removes all gasses, other than oxygen. I use a 2 ft tall tank on a cart when I'm out and a tank will run 8-9 hrs at 2 liters per minute.
I'm thinking that the BiPAP probably does sense and try to correct
episodes of apnea.
I'm still thinking that a headboard shelf set up for 2 PAP machines
would be EVER so sexy, hahaha!
Tender HUGGZZ,
Edgar

[Violet_Beauregard]

Interesting. So does your insurance pay for all that oxygen? What a pain in the ass that has to be dragging that thing around? I know you're happy with yourself and say that you're healthier now at 400 lb., but wouldn't getting off that oxygen make your life easier? Is that a goal?

I don't mean to be nibby, I'm just curious....


:)



Hi Violet, my BiPaP has a "tee" in the big hose that goes to the mask. The tee connects at the machine's outlet fitting and allows a 1/4" oxygen line
to mix oxygen with normal air as it comes out of the machine. I use 4 liters per minute at night on the BiPAP. I use 2 liters-per minute of oxygen during the day. At home, I use an oxygen concentrator, a 50lb machine that extracts oxygen from normal air. It has a compressor that pressureizes air, then a filter that removes all gasses, other than oxygen. I use a 2 ft tall tank on a cart when I'm out and a tank will run 8-9 hrs at 2 liters per minute.
I'm thinking that the BiPAP probably does sense and try to correct
episodes of apnea.
I'm still thinking that a headboard shelf set up for 2 PAP machines
would be EVER so sexy, hahaha!
Tender HUGGZZ,
Edgar

[imfree]

Interesting. So does your insurance pay for all that oxygen? What a pain in the ass that has to be dragging that thing around? I know you're happy with yourself and say that you're healthier now at 400 lb., but wouldn't getting off that oxygen make your life easier? Is that a goal?

I don't mean to be nibby, I'm just curious....


:)
Hi Violet, those words terrified me, back in 1973 when I joined the
United States Air Force. I was honorably discharged from the Air Force after 28 months of service because I became obese. The VA provides my oxygen, medical care, and medicines. I saw Dr TJ because a former neighbor insisted that I have this wonderful Christian as my endocrinologist and PCP. I had TennCare before the state had a big move to drop everyone they could. TJ was my dr while I had TennCare. TJ and an attorney are working to get me put on SSDI, Social Security Disability.
The oxygen tank cart is easy to deal with. The VA has been supplying me with year-round decongestants and nasal spray for a few months. My nose and sinuses are finally completely clear. I think it is very likely that the pulmonologist will take me off oxygen when I see him in september. A CT scan back in August of last year showed no lung damage and no lung disease.
The pulmonologist thinks my central nervous system is failing to make me breathe deeply and frequently enough. My condition should improve or stay the same. Clear breathing passages may have been all I needed.
We did discover that I can quickly recover my oxygen saturation, even without oxygen, simply by deliberately breathing faster and more deeply.
HUGGZZ,
Edgar

[Violet_Beauregard]

Well, the insurance industry is so volatile anyway, it's good that they cover what they do for you.

I think it would make you more mobile without the oxygen, so hopefully that will happen for you in September. Good luck.....




Hi Violet, those words terrified me, back in 1973 when I joined the
United States Air Force. I was honorably discharged from the Air Force after 28 months of service because I became obese. The VA provides my oxygen, medical care, and medicines. I saw Dr TJ because a former neighbor insisted that I have this wonderful Christian as my endocrinologist and PCP. I had TennCare before the state had a big move to drop everyone they could. TJ was my dr while I had TennCare. TJ and an attorney are working to get me put on SSDI, Social Security Disability.
The oxygen tank cart is easy to deal with. The VA has been supplying me with year-round decongestants and nasal spray for a few months. My nose and sinuses are finally completely clear. I think it is very likely that the pulmonologist will take me off oxygen when I see him in september. A CT scan back in August of last year showed no lung damage and no lung disease.
The pulmonologist thinks my central nervous system is failing to make me breathe deeply and frequently enough. My condition should improve or stay the same. Clear breathing passages may have been all I needed.
We did discover that I can quickly recover my oxygen saturation, even without oxygen, simply by deliberately breathing faster and more deeply.
HUGGZZ,
Edgar

[imfree]

Well, the insurance industry is so volatile anyway, it's good that they cover what they do for you.

I think it would make you more mobile without the oxygen, so hopefully that will happen for you in September. Good luck.....
Hi Violet, yes, I'd love the improved mobility. I used to shoot video at
church and on-location at other places and events. Mom bought me a small folding cart and I built an on-location, live DVD recording rig. I'm shooting 3 weddings in the next few months. It's in my heart to shoot on-location video.
I really missed it and I'm blessed to be able to resume my passion. I'll be even
further blessed when I go off oxygen and enjoy the improved mobility.
HUGGZZ,
The Video Guy,
Edgar

[Violet_Beauregard]

Well, being more mobile would enable you to be more active and to be able to that video stuff.... that will also boost your self esteem... (not that YOU need your self esteem boosted Edgar...yours is off the charts! LOL), but you know what I mean. It contributes to feeling like a "whole" person. Everyone needs that feeling.



Hi Violet, yes, I'd love the improved mobility. I used to shoot video at
church and on-location at other places and events. Mom bought me a small folding cart and I built an on-location, live DVD recording rig. I'm shooting 3 weddings in the next few months. It's in my heart to shoot on-location video.
I really missed it and I'm blessed to be able to resume my passion. I'll be even
further blessed when I go off oxygen and enjoy the improved mobility.
HUGGZZ,
The Video Guy,
Edgar

[imfree]

Well, being more mobile would enable you to be more active and to be able to that video stuff.... that will also boost your self esteem... (not that YOU need your self esteem boosted Edgar...yours is off the charts! LOL), but you know what I mean. It contributes to feeling like a "whole" person. Everyone needs that feeling.
Hahaha!!!, Violet, you're so sweet, and so right. If you can role
play tugging an oxygen tank-cart....just extending the tubing from 7ft to 14ft
has given me freedom. I can pump gas without taking the cart out of the car.
I can move around in church with ease as I give/receive HUGGZZ or shoot video!
I live with the oxy and the cart well because I adapt well. You won't believe me until you see me. I'm extremely agile and move very fast for a man my size. I can stand straight up from a chair in a second, not even pushing up with my hands as I rise! Naturally, the house shakes when I do that. My wild movement DOES use a lot of oxygen at times! The human heart and lungs allow an average person to sustain a power output of .1 horsepower, long term. I produce .75 horsepower when I raise my upper body(about 300lbs) 18" out of a chair in a second. See for yourself, do the math!
The 400lb WildMan,
Edgar

[imfree]

Well, being more mobile would enable you to be more active and to be able to that video stuff.... that will also boost your self esteem... (not that YOU need your self esteem boosted Edgar...yours is off the charts! LOL), but you know what I mean. It contributes to feeling like a "whole" person. Everyone needs that feeling.
Hahaha!, Thanks Violet. TJ LIVES her Christian faith with such passion, love, and spirit that she compels me to do likewise. Unshakeable self-esteem is just one of the benefits of living a spirit-filled life.
Spirited HUGGZZ,
Edgar

[Zandoz]

The smell isn't as bad. I don't have the humidifier yet, so that may help.

And you are right about the vanity thing. Hopefully it won't matter! That would be IF I ever find "Mr. Right"...... LOLOL

Not if....when!

[Zandoz]

Back on topic.... my CPAP..... can anyone suggest something for my nose? I use the nasal air pillows and the edges of my nose are so raw... It's like I have a cold and I've been blowing for a week straight.... ugh.

BBMe...you're my resident expert.... any thoughts??

First off, it sounds like you may have the nasal pillows pressed too tightly to your nose, or they are the wrong size. On the rare occasion I've had any irritation I've used just a dab what ever aloe moisturizing lotion available

[Zandoz]

Thanks Edgar!

Edgar you use a BiPAP...what's the difference between a CPAP and BiPAP?

The C of CPAP is for continuous...one continious pressure all the time. The Bi of BiPAP is for two pressures...one higher pressure while inhaling, and one lower while exhaling. The reason for the two pressures is that there is a limit to how high a constant pressure can be without inhibiting the ability to exhale. The problem is that for some people, the constant pressure limit is lower than what is needed to keep the airway open. The BiPAPs put out a considerably higher pressure, but have a sensing system to detect when inhaling stops, then very quickly drops the pressure to allow exhaling.

The systems that force people to breath work on a timing system...when there has been no change in pressure associated with inhaling, within a certain time, they automatically ramp up the pressure anyway...basically forcing the lungs into an inhale cycle.

Bored to sleep yet?

[imfree]

Not if....when!
Zandoz, I fully agree with you!
Edgar

[Violet_Beauregard]

Not if....when!

Unfortunately, I haven't reached that positivity yet!


First off, it sounds like you may have the nasal pillows pressed too tightly to your nose, or they are the wrong size. On the rare occasion I've had any irritation I've used just a dab what ever aloe moisturizing lotion available

I think the size is ok, but you might be right about loosening them. I'll try that. I did loosen them some, but I keep feeling like they're too loose. I've been putting some serious moisturizer on them. They are getting better.


The C of CPAP is for continuous...one continious pressure all the time. The Bi of BiPAP is for two pressures...one higher pressure while inhaling, and one lower while exhaling. The reason for the two pressures is that there is a limit to how high a constant pressure can be without inhibiting the ability to exhale. The problem is that for some people, the constant pressure limit is lower than what is needed to keep the airway open. The BiPAPs put out a considerably higher pressure, but have a sensing system to detect when inhaling stops, then very quickly drops the pressure to allow exhaling.

The systems that force people to breath work on a timing system...when there has been no change in pressure associated with inhaling, within a certain time, they automatically ramp up the pressure anyway...basically forcing the lungs into an inhale cycle.

Bored to sleep yet?

Absolutely not! Now at least I do know the difference. VERY interesting. I wonder if a BiPAP wouldn't be better for my boss. He has severe apnea, though he does say his CPAP has done wonders for him. Personally, I have some other factors that I think are inhibiting me from seeing the effects quite yet. I've been switching medications and I think that may be part of the issue.


Zandoz, I fully agree with you!
Edgar

Keep thinking positive for me Edgar...Mr. Right has got to be somewhere here in Ohio!

[imfree]

Unfortunately, I haven't reached that positivity yet!




I think the size is ok, but you might be right about loosening them. I'll try that. I did loosen them some, but I keep feeling like they're too loose. I've been putting some serious moisturizer on them. They are getting better.




Absolutely not! Now at least I do know the difference. VERY interesting. I wonder if a BiPAP wouldn't be better for my boss. He has severe apnea, though he does say his CPAP has done wonders for him. Personally, I have some other factors that I think are inhibiting me from seeing the effects quite yet. I've been switching medications and I think that may be part of the issue.




Keep thinking positive for me Edgar...Mr. Right has got to be somewhere here in Ohio!

Hahaha, Violet, well that rules me out since I'm at least 322 miles south of you! My love does not think of self and I love you, anyway. Please pray for me, that I'm united with my ms. right.
Lovingly
In Tears,
Edgar

[Violet_Beauregard]

Awww Edgar.... you can always be my long-distance loving admirer... count on that. :wubu: I don't think geography will allow otherwise! LOL I will pray that you find Ms Right... and if she has a brother in Ohio, send him my way!!


Hahaha, Violet, well that rules me out since I'm at least 322 miles south of you! My love does not think of self and I love you, anyway. Please pray for me, that I'm united with my ms. right.
Lovingly
In Tears,
Edgar

[imfree]

Awww Edgar.... you can always be my long-distance loving admirer... count on that. :wubu: I don't think geography will allow otherwise! LOL I will pray that you find Ms Right... and if she has a brother in Ohio, send him my way!!
Hahaha!!!, Violet, if we BOTH get lucky, I'll send him your way.
Other than a great church and doctor, I'm not really bolted-down in middle Tn.
Just about every major city has a VA hospital, too. TJ takes my sugars & BP's
by email, anyway. My ex dissolved all our property and I live with my mother...
.......hahaha!
Your Long-Distance
Loving Admirer,
Edgar

[Violet_Beauregard]

I lost track of the day I'm on the CPAP..... Last night I was exhausted. I got up over an hour early yesterday to pick up my boss for work (he goes in earlier than me) as a favor. (he's a very nice guy, didn't have a problem doing the favor) And I was up later than usual, as my nephew is up visiting for the weekend (he's 13...we were watching a movie as I was goofing online). And it was a stressful/emotional day for a number of reasons. Any who, when I finally went to bed and got on the CPAP, I had a feeling I would sleep well, and I did. I only recall waking up once to turn over...I slept the rest of the night, until 7:00 am when I heard my nephew get up and come down the hall. I'm hoping that the good sleep continues.

The nasal pillows are still killing my nose, but I got some good cream that's helping. I loosened the straps a little bit and that's helped. I still absolutely HATE the head gear and what it does to my hair. I have very long hair (as you can see in my avatar) and that head gear can be a real problem. Most nights I pull it back into a ponytail to avoid it getting tangled in the head gear. I think I've left it free only twice...big mistake.

[BigBeautifulMe]

I have longer hair, too, Vi, and I also pull it back into a ponytail every night. Also helps keep the headgear in place. :) The good news is that even with the velcro-y straps I have, there's no damage being done to my hair. People who have started to see damage with it have started wearing caps of various kinds under it. Keep in mind that's an option if you start worrying about that, and I'll do a little reserach and post ideas for you. Good luck, and glad you slept well last night!

[Violet_Beauregard]

Thanks! I don't think it's damaging my hair, but I hate that it's all smashed down the next morning. Some days I can get away with not washing and drying and flattening my hair, depending on how it looks in the morning... not with wearing the head gear! If you find anything interesting though, please let me know! :)




I have longer hair, too, Vi, and I also pull it back into a ponytail every night. Also helps keep the headgear in place. :) The good news is that even with the velcro-y straps I have, there's no damage being done to my hair. People who have started to see damage with it have started wearing caps of various kinds under it. Keep in mind that's an option if you start worrying about that, and I'll do a little reserach and post ideas for you. Good luck, and glad you slept well last night!

[Violet_Beauregard]

Another good sleeping night last night. I'm hoping this keeps up!

[BigBeautifulMe]

Yay, Violet! Your cheering section is going wild! :D

[Violet_Beauregard]

Wooo hooo!! Me too!!!





Yay, Violet! Your cheering section is going wild! :D

[imfree]

Yay, Violet! Your cheering section is going wild! :D
Count me as being in that cheering section!
Edgar

[Violet_Beauregard]

Last couple of nights have been.... eh..... Not feeling well at all today. I have mild migrane and I'm considering skipping the CPAP tonight. I just don't think I can deal with the head gear and noise tonight.

Anyone else have that problem at times?

[BigBeautifulMe]

Don't skip it, Violet. You'll feel MUCH worse if you do. The effects of a night without CPAP are horriffic, once you get used to life with it. Trust me on this one. Also, one of the side effects of untreated apnea is headache, and you really don't want it to be worse. Not to mention the damage you do to your heart and...yes, you already know. :) Stick with it!

[Violet_Beauregard]

Ohhh...Oookay... you talked me into it. I'll give it a try.... If I'm miserable, I'm taking it off! :) BUT, I'll at least try it..... Just for you BBMe..... :batting:



Don't skip it, Violet. You'll feel MUCH worse if you do. The effects of a night without CPAP are horriffic, once you get used to life with it. Trust me on this one. Also, one of the side effects of untreated apnea is headache, and you really don't want it to be worse. Not to mention the damage you do to your heart and...yes, you already know. :) Stick with it!

[imfree]

Don't skip it, Violet. You'll feel MUCH worse if you do. The effects of a night without CPAP are horriffic, once you get used to life with it. Trust me on this one. Also, one of the side effects of untreated apnea is headache, and you really don't want it to be worse. Not to mention the damage you do to your heart and...yes, you already know. :) Stick with it!
She's right, listen to her.

[Violet_Beauregard]

Well I did wear it and I slept pretty good, but not because of the CPAP...I think I was just so damn tired.... My head was killing me. I'm better today. I'm surprised that the headgear and nasal pillows didn't bother me more, since I didn't feel well. Probably cause I was so tired. Either way, I wore it.




She's right, listen to her.

[imfree]

Well I did wear it and I slept pretty good, but not because of the CPAP...I think I was just so damn tired.... My head was killing me. I'm better today. I'm surprised that the headgear and nasal pillows didn't bother me more, since I didn't feel well. Probably cause I was so tired. Either way, I wore it.
Good, I'm glad you didn't give in to the temptation not to use
the CPAP. You probably needed it more than ever last night. In my case, with
my apnea being central nervous system related, I could possibly have a fatal
apnea episode if I was extremely fatigued and went to sleep without the
BiPAP.
Though my interaction is quieter now, be assured that I still
think you're most adorable and I want you to take good care of yourself.
Your Friend,
Edgar

[BigBeautifulMe]

So proud of you, Violet. :) You totally did the right thing. :)

Mwah!

[Miss Vickie]

Violet, I'm so happy and pleased that you're continuing to use the CPAP, even when it's not convenient. When you're not feeling good is probably the most important time to use it.

Just an update on my sweetie. He went in for his final check with the sleep people and his blood pressure was dead-on normal -- for the first time in... oh... forever. :) He hasn't changed anything else but started using the CPAP so I give the credit to it, and to him for sticking with it. He's got an amazing amount of energy, is far more alert, and in general seems to be a much happier guy. And with any luck he'll be around for a long time to come. :)

[Violet_Beauregard]

Thanks Edgar....you're still too sweet to me.... :)


Good, I'm glad you didn't give in to the temptation not to use
the CPAP. You probably needed it more than ever last night. In my case, with
my apnea being central nervous system related, I could possibly have a fatal
apnea episode if I was extremely fatigued and went to sleep without the
BiPAP.
Though my interaction is quieter now, be assured that I still
think you're most adorable and I want you to take good care of yourself.
Your Friend,
Edgar




Thank you... I'm so happy you're proud!! :)

So proud of you, Violet. :) You totally did the right thing. :)

Mwah!





Thanks! It's a pain in the a$$, but I am trying to stick with it.

Glad to hear your sweetie is seeing the effects! If he has marked improvement, that is terrific!!

Violet, I'm so happy and pleased that you're continuing to use the CPAP, even when it's not convenient. When you're not feeling good is probably the most important time to use it.

Just an update on my sweetie. He went in for his final check with the sleep people and his blood pressure was dead-on normal -- for the first time in... oh... forever. :) He hasn't changed anything else but started using the CPAP so I give the credit to it, and to him for sticking with it. He's got an amazing amount of energy, is far more alert, and in general seems to be a much happier guy. And with any luck he'll be around for a long time to come. :)

[Violet_Beauregard]

More CPAP thoughts.... I know it's still early, but I swear this CPAP isn't really doing much for me. I'm still a bit tired during the day, and still tired in the evenings when I'm watching TV. I still have to fight to stay awake at 7:00. And I'm sure not springing out of bed in the mornings. These are all things that I thought would improve. I expected it almost instantly, but I know that was somewhat unrealistic. Well here I am nearly 3 weeks on this thing and I'm really not seeing too much. Is it me?? Am I still expecting big results too soon? I swear I sleep worse because of it... messing the the headgear and the hose..what a pain.... I know I wake several times to deal with that stuff. WHAT AM I DOING WRONG HERE???

[imfree]

More CPAP thoughts.... I know it's still early, but I swear this CPAP isn't really doing much for me. I'm still a bit tired during the day, and still tired in the evenings when I'm watching TV. I still have to fight to stay awake at 7:00. And I'm sure not springing out of bed in the mornings. These are all things that I thought would improve. I expected it almost instantly, but I know that was somewhat unrealistic. Well here I am nearly 3 weeks on this thing and I'm really not seeing too much. Is it me?? Am I still expecting big results too soon? I swear I sleep worse because of it... messing the the headgear and the hose..what a pain.... I know I wake several times to deal with that stuff. WHAT AM I DOING WRONG HERE???
Violet, you could have other issues, bed, environment in the bedroom,
food eaten before bed, etc. One night, before I was on the BiPAP, my then GF
and I cuddled and caressed for a couple hours, fell asleep in each-other's arms, then woke up 4 hours later in the SAME position! I flailed my arms and
legs violently in my sleep study, yet I slept the same amount of time in my
GF's arms without moving at all! It makes me wonder.

[Violet_Beauregard]

Thanks Edgar.... I have thought of those things.... I do like the room dark and silent, and the sound of the CPAP has been kind of annoying, but not terrible. I do try to watch what I eat before bed, as I do know some foods tend to keep me awake.... sadly, chocolate being one of them!! I'll put some thought into it though, and see if there is something else that might be interfering.




Violet, you could have other issues, bed, environment in the bedroom,
food eaten before bed, etc. One night, before I was on the BiPAP, my then GF
and I cuddled and caressed for a couple hours, fell asleep in each-other's arms, then woke up 4 hours later in the SAME position! I flailed my arms and
legs violently in my sleep study, yet I slept the same amount of time in my
GF's arms without moving at all! It makes me wonder.

[imfree]

Thanks Edgar.... I have thought of those things.... I do like the room dark and silent, and the sound of the CPAP has been kind of annoying, but not terrible. I do try to watch what I eat before bed, as I do know some foods tend to keep me awake.... sadly, chocolate being one of them!! I'll put some thought into it though, and see if there is something else that might be interfering.
Hahaha!!!, seriously though, as much as I would like to attribute the improved sleep to having an SSBBW bedmate and the emotional benefit therewith, It may have been better breathing that resulted from the improved support of my body, while in her arms.
The sound of the BiPAP actually helps me by masking out other sounds that could interfere with my sleep.

[Miss Vickie]

More CPAP thoughts.... I know it's still early, but I swear this CPAP isn't really doing much for me. I'm still a bit tired during the day, and still tired in the evenings when I'm watching TV. I still have to fight to stay awake at 7:00. And I'm sure not springing out of bed in the mornings. These are all things that I thought would improve. I expected it almost instantly, but I know that was somewhat unrealistic. Well here I am nearly 3 weeks on this thing and I'm really not seeing too much. Is it me?? Am I still expecting big results too soon? I swear I sleep worse because of it... messing the the headgear and the hose..what a pain.... I know I wake several times to deal with that stuff. WHAT AM I DOING WRONG HERE???

Hey there,

I think maybe you are expecting too much, at least this early on. My sweetie still by no means springs out of bed, but most of the time he's far more alert than he was before the CPAP. The told him not to expect anywhere near the full benefits until 4-6 weeks after using it, since his body was so deprived of sleep for so long. So it's not surprising that you don't feel the magic yet, but even so, you're still reducing your risk of heart attack and stroke, which makes it worth it, even if nothing else changed. The data coming in seems to increasingly suggest that sleep apnea is behind a LOT of medical problems so you're prolonging your life by using the machine.

Also, do they have you on Ambien or anything to help you sleep? If not, that might be something to think about, especially if you're struggling to get/stay asleep.

Good luck, and keep on keepin' on, okay?

[Violet_Beauregard]

Thanks for the support, and the info. No one ever said it would take 4-6 weeks to see anything significant. I think the only thing I had to go by was my boss' experience, and he claimed to have overnight results, literally. I guess I will just have to stick with it and be patient....

Thanks though, I appreciate it!!!


Hey there,

I think maybe you are expecting too much, at least this early on. My sweetie still by no means springs out of bed, but most of the time he's far more alert than he was before the CPAP. The told him not to expect anywhere near the full benefits until 4-6 weeks after using it, since his body was so deprived of sleep for so long. So it's not surprising that you don't feel the magic yet, but even so, you're still reducing your risk of heart attack and stroke, which makes it worth it, even if nothing else changed. The data coming in seems to increasingly suggest that sleep apnea is behind a LOT of medical problems so you're prolonging your life by using the machine.

Also, do they have you on Ambien or anything to help you sleep? If not, that might be something to think about, especially if you're struggling to get/stay asleep.

Good luck, and keep on keepin' on, okay?

[Zandoz]

I really think that the degree of dramatic effect of a CPAP is related a lot to just how bad off the person was in the first case...and to what degree the apnea was part of the sleep problem in the first place. The person who is near death because of apnea issues is going to see a more dramatic difference than the person who has a lesser case of apnea...And the person who has other sleep issues is going to see less dramatic change than the ones with single issues. No telling which or to what degree you fit in those categories.

Yes, the sound is going to take a while to get used to...but in time it will be no different than sleeping in a room with a large fan or AC.

The fiddling with the headgear is partially a "getting used to it" issue...and very likely partially a different issue all together. It sounds to me like you still have not hit on the right headgear/hose combo and set up. It may be a matter of mechanical adjustment...or it may be that you need a different setup all together.

One thing to consider...you may well need to take your issues...and maybe even your equipment...back to the sleep clinic and ask for help in making it right. My first mask and headgear were not right for me...and I tried to "tuff it out". In the end it took getting insistent with the clinic that more than enough money had been spent to justify my insistence that it be right. They finally sent someone to my house to examine the set up, and figure out the headgear that was right for me.

[Violet_Beauregard]

Thank you.... I do tend to agree with you about the affects being different for different levels of apnea. My case was mild. When my sleep study was done, I read the report and my oxygen level only dropped below 90% one time... to 86%. The remainder of the time my level averaged 94%. All of this is why I didn't think I needed it in the first place.

You may be right about getting the right headgear as well. I'm a side sleeper, and using the nasal pillows is OK...I know I absolutely do not want the face mask covering my face. I think I'd feel smothered. The with the nasal pillows the hose connects to the side of the pillows. So when I sleep on that side, the hose is getting in the way. I alternate from side to side, so that is an issue. I've seen some nasal pillows with the hose going up over the head....not for me.

I don't know.... I'm going to have to do some more searching and see if I find anything else that I think would work for me. I don't think switching would be an issue. The home health care place was very good and the woman told me to contact her if I had any issues with the machine or headgear. So hopefully if I find something else, they can take care of it.

Thank you so much for the thoughts and the suggestions. I very much appreciate it!





I really think that the degree of dramatic effect of a CPAP is related a lot to just how bad off the person was in the first case...and to what degree the apnea was part of the sleep problem in the first place. The person who is near death because of apnea issues is going to see a more dramatic difference than the person who has a lesser case of apnea...And the person who has other sleep issues is going to see less dramatic change than the ones with single issues. No telling which or to what degree you fit in those categories.

Yes, the sound is going to take a while to get used to...but in time it will be no different than sleeping in a room with a large fan or AC.

The fiddling with the headgear is partially a "getting used to it" issue...and very likely partially a different issue all together. It sounds to me like you still have not hit on the right headgear/hose combo and set up. It may be a matter of mechanical adjustment...or it may be that you need a different setup all together.

One thing to consider...you may well need to take your issues...and maybe even your equipment...back to the sleep clinic and ask for help in making it right. My first mask and headgear were not right for me...and I tried to "tuff it out". In the end it took getting insistent with the clinic that more than enough money had been spent to justify my insistence that it be right. They finally sent someone to my house to examine the set up, and figure out the headgear that was right for me.

[Miss Vickie]

Thanks for the support, and the info. No one ever said it would take 4-6 weeks to see anything significant. I think the only thing I had to go by was my boss' experience, and he claimed to have overnight results, literally. I guess I will just have to stick with it and be patient....

Thanks though, I appreciate it!!!

Yeah, it can be frustrating when people exaggerate their results. A buddy of my brother's said that he was home from the hospital in two days after a heart bypass, and playing golf the next week. Ummmmmmm, maybe miniature golf, but given the sternum guidelines, I doubt even that. But that set my brother up for feeling like a failure since his surgery took WAY longer to recover from.

And I absolutely agree with Zandoz. If your headgear isn't working for you, take it back. It's not at ALL unusual to have to swap stuff out several times before finding the right combination.

[Violet_Beauregard]

Well, as Zandoz said, the results are not the same for everyone...as everyone's apnea levels are different. I feel like I sound like a whining baby about this, and I definitely have a negative attitude about it...I have from the start, but I am trying. I'll just have to keep working on it.

Thanks!!!!!



Yeah, it can be frustrating when people exaggerate their results. A buddy of my brother's said that he was home from the hospital in two days after a heart bypass, and playing golf the next week. Ummmmmmm, maybe miniature golf, but given the sternum guidelines, I doubt even that. But that set my brother up for feeling like a failure since his surgery took WAY longer to recover from.

And I absolutely agree with Zandoz. If your headgear isn't working for you, take it back. It's not at ALL unusual to have to swap stuff out several times before finding the right combination.

[BigBeautifulMe]

Some people DO feel better that quickly. Some people (like me) also take as long as a year and a half to feel better. Some even take longer. The majority fall somewhere in between. It's a personal thing, and it depends on if you were titrated correctly and other variables, but a big part of it is how quickly you find the right mask and right setup for you. I do agree that you need to keep working til you find a mask that works for you and doesn't keep waking you up. You're really not sleeping WORSE, as unless you had less than one apnea event per hour, you were waking up MORE often with the apnea than you are now, PLUS doing physical damage. Remember that. :) It is quite true that you have sleep debt to make up - just be patient with yourself, and don't give up. :)

[Violet_Beauregard]

Oh my lord, a year? Good heavens...whew, do I have a long way to go. :blink: I'll just have to put up with it and keep trying.



Some people DO feel better that quickly. Some people (like me) also take as long as a year and a half to feel better. Some even take longer. The majority fall somewhere in between. It's a personal thing, and it depends on if you were titrated correctly and other variables, but a big part of it is how quickly you find the right mask and right setup for you. I do agree that you need to keep working til you find a mask that works for you and doesn't keep waking you up. You're really not sleeping WORSE, as unless you had less than one apnea event per hour, you were waking up MORE often with the apnea than you are now, PLUS doing physical damage. Remember that. :) It is quite true that you have sleep debt to make up - just be patient with yourself, and don't give up. :)

[BigBeautifulMe]

Like I said, most people see results much sooner than that (and you should - if you're not, there's some other problem going on. In my case, it was mistitration.)

Just don't give up. :) It doesn't seem like you're going to. :)

[MLadyJ]

Violet...I just read your posts..kinda late but here is MHO. I have been on a CPAP for years. At first I had the nasal pillows and eventually quit using the machine altogether because of the nose sores. Later someone told me about the partial face mask and I've been using it ever since. The first few nights (on the new device) I had terrible headaches in the morning. I almost gave up again, but instead called the respitory folks and it turns out I had the wrong sized mask. Armed with the correct fitting mask, and properly adjusted, it works very well. I felt relief almost immediately. On the mornings I wake not feeling a whole lot better I discovered that I also had a dry mouth and throat and found out I was opening my mouth in my sleep, which kind of negates the whole function of the CPAP. Good luck..

[Zandoz]

Thank you.... I do tend to agree with you about the affects being different for different levels of apnea. My case was mild. When my sleep study was done, I read the report and my oxygen level only dropped below 90% one time... to 86%. The remainder of the time my level averaged 94%. All of this is why I didn't think I needed it in the first place.

You may be right about getting the right headgear as well. I'm a side sleeper, and using the nasal pillows is OK...I know I absolutely do not want the face mask covering my face. I think I'd feel smothered. The with the nasal pillows the hose connects to the side of the pillows. So when I sleep on that side, the hose is getting in the way. I alternate from side to side, so that is an issue. I've seen some nasal pillows with the hose going up over the head....not for me.

I don't know.... I'm going to have to do some more searching and see if I find anything else that I think would work for me. I don't think switching would be an issue. The home health care place was very good and the woman told me to contact her if I had any issues with the machine or headgear. So hopefully if I find something else, they can take care of it.

Thank you so much for the thoughts and the suggestions. I very much appreciate it!

I'm a side sleeper to...and the nasal pillows are what worked for me...after being sure I had the right equipment and a bit of creativity on my part. First off, do you have a swivel between the hose and the part that actually holds the pillows? If not, you need one. My headgear is the type that the hose goes over the top of my head...but I do not use it as the manufacturer intended.

I'm not sure how well I can explain my set up, but I'll give it a shot. As designed, there is a strap on my headgear that runs from my forehead, over the top of my head, to the back of my head...the hose is connected to that strap by two Velcro loops. The manufacturer intended that strap to be snug but not overly so to the top of the head. What worked for me was loosening that strap as much as I could. If I pull up on it, there is several inches between the top of my head and the strap. That swivel I mentioned is between the Velcro loop holding the hose closest to my forehead and the pillow holder at my nose....basically at my forehead. The pillow holder is held in place at my nose by another strap that fastens to the headgear above each ear. For me the rest of the headgear is not positioning the nasal pillows...it's not keeping the hose tight against the top of my head...it's simply keeping the hose near-by without binding. The swivel allows the movement of the hose as I turn side to side with minimal effect on the fit of the pillows. The other thing I had to do to facilitate using the CPAP/BiPAP was getting rid of the bed headboard...it interfered with the hose and therefore my ability to turn. Our bed sits several inches from the wall to keep from binding the hose as it comes over the end of the bed, over the pillow.

What it all boils down to is two things. Minimizing anything that can bind the hose, while allowing it to make connection to the point of the body that moves the least when turning side to side...the top of the head. And minimizing the effect of turning and hose positioning has on the point where the pillows meet your nose...the swivel.

BTW...you mentioned one huge factor that is inhibiting the effectiveness of the CPAP. There are reasons totally unrelated to apnea that necessitates you and I sleeping on our sides, and frequently rolling over...what ever that reason is for you, is one of, if not the "other factor" I've mentioned before. In my case, it's pinched nerves in the back that causes extreme burning sensations in my legs when laying flat and straight-legged...or in one position very long. For you I have no way of knowing. But it's a pretty safe bet that what ever it is, it's a gremlin in the works when it comes to you getting a good night's sleep.

[Violet_Beauregard]

Here is the mask that I have. I don't wear the hose up on the top. The CPAP sits on the right side of my bed, so the hose comes out of the right. If it were in the center, instead of the right or left, I could probably sleep on my side easier. Any suggestions after seeing the mask I use??

I'm not sure sleeping on my side is necessarily a physical issue. I've always slept on my side. As a matter of fact, if I lay on one side too long, my hip goes numb...sometimes. That's part of the reason I switch sides sometimes.

[imfree]

Hi Violet, I like my Respironics Comfort Gel. The hose fitting swivels.

[Violet_Beauregard]

Boy Edgar, I don't think I'd like the whole thing over my nose and mouth. I think I'd feel kinda of smothered. You are used to it though.



Hi Violet, I like my Respironics Comfort Gel. The hose fitting swivels.

[imfree]

I've used both, but this one is a nose-only model.

[Violet_Beauregard]

Ah... I think my boss has the nose and mouth model.... he's a mouth breather though......



I've used both, but this one is a nose-only model.

[BigBeautifulMe]

Hi Violet. If you hang the hose up at the center point of where you sleep, that will keep it to the center of where you're sleeping, and out of your way. I posted a bit on how to hang the hose up here: http://www.dimensionsmagazine.com/forums/showpost.php?p=363738&postcount=25

If you have any questions about that, feel free to ask.

[Zandoz]

Here is the mask that I have. I don't wear the hose up on the top. The CPAP sits on the right side of my bed, so the hose comes out of the right. If it were in the center, instead of the right or left, I could probably sleep on my side easier. Any suggestions after seeing the mask I use??

I'm not sure sleeping on my side is necessarily a physical issue. I've always slept on my side. As a matter of fact, if I lay on one side too long, my hip goes numb...sometimes. That's part of the reason I switch sides sometimes.

Being a "side sleeper", the unit you have would drive me nuts. With the hose positioned as in the first pic I'd constantly be tangled in it...like the second it would be constantly pushed out of position by the pillow when sleeping on the side with the hose.

I've attached a pic of the kind of setup I have. No interference no matter which side I sleep on.

[Violet_Beauregard]

I don't know what I'm going to do. I'm about to toss it out the window! LOL I may put the CPAP above my headboard. My bed is under the window and there's a large shelf under the window sill. Perfect place for the CPAP. I may put it there and have the hose going above me. That might help.

Thanks!!



Hi Violet. If you hang the hose up at the center point of where you sleep, that will keep it to the center of where you're sleeping, and out of your way. I posted a bit on how to hang the hose up here: http://www.dimensionsmagazine.com/forums/showpost.php?p=363738&postcount=25

If you have any questions about that, feel free to ask.

[Violet_Beauregard]

I don't know.... I think having that hose right in front of my eyes would bug me.... even though they'd be closed! LOL....


Being a "side sleeper", the unit you have would drive me nuts. With the hose positioned as in the first pic I'd constantly be tangled in it...like the second it would be constantly pushed out of position by the pillow when sleeping on the side with the hose.

I've attached a pic of the kind of setup I have. No interference no matter which side I sleep on.

[Ho Ho Tai]

Being a "side sleeper", the unit you have would drive me nuts. With the hose positioned as in the first pic I'd constantly be tangled in it...like the second it would be constantly pushed out of position by the pillow when sleeping on the side with the hose.

I've attached a pic of the kind of setup I have. No interference no matter which side I sleep on.

My wife (Mrs Ho Ho) has used one like yours successfully for over four years. She feeds the hose down from above her with a clamp, and sleeps on her back. This has been quite successful, and is quiet enough not to interfere with my sleep.

However, if it gets a bit out of position, it sounds like this:

http://www.basement24.com/galleries/starwars/2006/darth-vader-helmet.jpg

Sorry - couldn't resist.

[imfree]

My wife (Mrs Ho Ho) has used one like yours successfully for over four years. She feeds the hose down from above her with a clamp, and sleeps on her back. This has been quite successful, and is quiet enough not to interfere with my sleep.

However, if it gets a bit out of position, it sounds like this:

http://www.basement24.com/galleries/starwars/2006/darth-vader-helmet.jpg

Sorry - couldn't resist.
Hahaha!!!, I couldn't resis, either!

"Don't be so proud of this technological terror you have
constructed, the ability to destroy a planet is insignifigant, next
to the power of the fowace!"
Darth Vader, Star Wars, 1977

[Violet_Beauregard]

Ok... THAT is funny..... and so TRUE!!!!




My wife (Mrs Ho Ho) has used one like yours successfully for over four years. She feeds the hose down from above her with a clamp, and sleeps on her back. This has been quite successful, and is quiet enough not to interfere with my sleep.

However, if it gets a bit out of position, it sounds like this:

http://www.basement24.com/galleries/starwars/2006/darth-vader-helmet.jpg

Sorry - couldn't resist.

[Violet_Beauregard]

I've been watching all 6 star wars movies over the last few weeks..... it seems like that's all that is on the HBO's...... my CPAP DOES sound like Darth Vader!!!!!

LOLOLOL




Hahaha!!!, I couldn't resis, either!

"Don't be so proud of this technological terror you have
constructed, the ability to destroy a planet is insignifigant, next
to the power of the fowace!"
Darth Vader, Star Wars, 1977

[imfree]

I've been watching all 6 star wars movies over the last few weeks..... it seems like that's all that is on the HBO's...... my CPAP DOES sound like Darth Vader!!!!!

LOLOLOL
Hahaha!!!, you should see video of me doing Darth Vader in a mask!
I mic the hose for an echo-effect and mic the oxygen concentrator for
the machinery sounds.

[Violet_Beauregard]

No, not yet. Other than the soreness around the bottom edge of my nose, the inside hasn't been bad at all.



Violet, do you have the humidifier for your CPAP yet?

[Zandoz]

I don't know.... I think having that hose right in front of my eyes would bug me.... even though they'd be closed! LOL....

Actually, it's not that intrusive...kinda like the bridge of glasses...it's so close to your face that unless looking cross-eyed it's not noticed it that much. It definately does not make a fashion statement...except maybe at Halloween...LOL...but it is effective at minimizing hose interferance for side sleeping.

[Zandoz]

My wife (Mrs Ho Ho) has used one like yours successfully for over four years. She feeds the hose down from above her with a clamp, and sleeps on her back. This has been quite successful, and is quiet enough not to interfere with my sleep.

However, if it gets a bit out of position, it sounds like this:

http://www.basement24.com/galleries/starwars/2006/darth-vader-helmet.jpg

Sorry - couldn't resist.

No need for sorry...you're right on with that analogy...LOL

[Violet_Beauregard]

Hmmmm, definitely something to consider then.....


Actually, it's not that intrusive...kinda like the bridge of glasses...it's so close to your face that unless looking cross-eyed it's not noticed it that much. It definately does not make a fashion statement...except maybe at Halloween...LOL...but it is effective at minimizing hose interferance for side sleeping.

[Violet_Beauregard]

Well, I have continued to wear the CPAP, though I still don't think it's doing any good, and if anything, it's keeping me up at night. Friday night I got so frustrated I took it off in the middle of the night and went back to sleep, and slept thru the night. Saturday night I didn't wear it at all, and had the best night's sleep I've had in weeks. Last night I wore it until nearly dawn. I don't know what I'm going to do tonight. I haven't made up my mind yet. I think it will depend on how I feel when I head to bed. I'm considering a different locale for my machine itself. Above me on a shelf under my window. It might be better for hose management.

I know, I know....you're all annoyed... :( ... I haven't given up yet...I'm just adjusting and working this out as best I can. I've had a stressful week...several things causing me grief, and I'm trying to stick with using the CPAP. I just need to get things straightened around. I hope that makes sense and you all understand. :)

Feel free to give encouragement, kudos, support, praise.... LOLOL... just kidding.... :D Thanks for all the kind words so far....it is truly appreciated.

[imfree]

Well, I have continued to wear the CPAP, though I still don't think it's doing any good, and if anything, it's keeping me up at night. Friday night I got so frustrated I took it off in the middle of the night and went back to sleep, and slept thru the night. Saturday night I didn't wear it at all, and had the best night's sleep I've had in weeks. Last night I wore it until nearly dawn. I don't know what I'm going to do tonight. I haven't made up my mind yet. I think it will depend on how I feel when I head to bed. I'm considering a different locale for my machine itself. Above me on a shelf under my window. It might be better for hose management.

I know, I know....you're all annoyed... :( ... I haven't given up yet...I'm just adjusting and working this out as best I can. I've had a stressful week...several things causing me grief, and I'm trying to stick with using the CPAP. I just need to get things straightened around. I hope that makes sense and you all understand. :)

Feel free to give encouragement, kudos, support, praise.... LOLOL... just kidding.... :D Thanks for all the kind words so far....it is truly appreciated.

You can count on me. Be kind to that adorable bod of yours,
"it's the most wonderful instrument you'll ever own" (Baz Lurman-Sunscreen)
HUGGZZ, Edgar

[Violet_Beauregard]

Thanks Edgar..... I really do appreciate it....

Vi


You can count on me. Be kind to that adorable bod of yours,
"it's the most wonderful instrument you'll ever own" (Baz Lurman-Sunscreen)
HUGGZZ, Edgar

[Ho Ho Tai]

Well, I have continued to wear the CPAP, though I still don't think it's doing any good, and if anything, it's keeping me up at night. Friday night I got so frustrated I took it off in the middle of the night and went back to sleep, and slept thru the night. Saturday night I didn't wear it at all, and had the best night's sleep I've had in weeks. Last night I wore it until nearly dawn. I don't know what I'm going to do tonight. I haven't made up my mind yet. I think it will depend on how I feel when I head to bed. I'm considering a different locale for my machine itself. Above me on a shelf under my window. It might be better for hose management.



Violet - I see one thing in your statement, above, that sends up a warning flag. We use a bookcase as a headboard. The top shelf might be ideal for a CPAP, except for the chance of pulling it on top your head in the middle of the night, should you be tossing and turning with the mask and hose connected. My wife places hers on a nightstand, lower than her head, but runs the hose up through a clamp to a position about 8" above her head. This works very well.

There are still several other conditions which can be troublesome, and of which you may already be aware. The first is called 'rainout' and refers to condensation in the hose, between the humidifier and the mask. The extend depends on both room temperature and humidity, and the temperature setting on the humidifier. If there is a 'saddle point' in the hose, i.e., an intermediate low point between humidifier and mask, the moisture will collect there and gurgle away. At first, I was concerned that Mrs Ho Ho would collect fluid in her lungs all night long, a few drops at at time, and drown in slow motion. There do not seem to be any recorded instances of this happening.

The other condition is aphasia, in which excess air pressure results in a portion being forced into the esophagus and causing distension in the abdomen. Rather like overindulging in the church social baked beans. The distension can be quite uncomfortable, and not that easy to get rid of. If you need to get up in the morning and out to the job, you really want to avoid this. Mrs Ho Ho tells me that it is worst if she happens to turn on her side (she normally sleeps on her back.) If it happens consistently, you may need to have the delivery pressure adjusted.

One other suggestion: if your health provider and insurance permits, you may be able to get a finger-clip oxygen saturation monitor. If attached to a recording device (such as a Holter monitor) you could compare the peaks and valleys with and without the mask. If all is working as it should, it may give you a bit more confidence and persistence in using the equipment.

Good luck.

[Violet_Beauregard]

Thanks for the info Ho Ho. The shelf above my headboard is about an inch lower than my headboard, so there would at least be a little bit of something to keep it from falling on my head. I've had it on my nightstand, but I was hoping to get it out of the way.

On the other points, I don't have a humidifier yet. So far, the dryness hasn't been too bad. If I stick with the machine, I may end up getting the humidifier eventually.

As far as the aphasia, my air pressure is quite low, only a 7, so I don't think it will be too bad, but I'll definitely keep an eye on it.

Thanks so much for the info... I really appreciate it! I'm trying very hard to get used to this machine. My case of apnea was very, very mild, and honestly, I'm surprised my doctor recommended the machine. But, I'll see how it goes.

Thanks again!




Violet - I see one thing in your statement, above, that sends up a warning flag. We use a bookcase as a headboard. The top shelf might be ideal for a CPAP, except for the chance of pulling it on top your head in the middle of the night, should you be tossing and turning with the mask and hose connected. My wife places hers on a nightstand, lower than her head, but runs the hose up through a clamp to a position about 8" above her head. This works very well.

There are still several other conditions which can be troublesome, and of which you may already be aware. The first is called 'rainout' and refers to condensation in the hose, between the humidifier and the mask. The extend depends on both room temperature and humidity, and the temperature setting on the humidifier. If there is a 'saddle point' in the hose, i.e., an intermediate low point between humidifier and mask, the moisture will collect there and gurgle away. At first, I was concerned that Mrs Ho Ho would collect fluid in her lungs all night long, a few drops at at time, and drown in slow motion. There do not seem to be any recorded instances of this happening.

The other condition is aphasia, in which excess air pressure results in a portion being forced into the esophagus and causing distension in the abdomen. Rather like overindulging in the church social baked beans. The distension can be quite uncomfortable, and not that easy to get rid of. If you need to get up in the morning and out to the job, you really want to avoid this. Mrs Ho Ho tells me that it is worst if she happens to turn on her side (she normally sleeps on her back.) If it happens consistently, you may need to have the delivery pressure adjusted.

One other suggestion: if your health provider and insurance permits, you may be able to get a finger-clip oxygen saturation monitor. If attached to a recording device (such as a Holter monitor) you could compare the peaks and valleys with and without the mask. If all is working as it should, it may give you a bit more confidence and persistence in using the equipment.

Good luck.

[LillyBBBW]

I've been enjoying reading your posts and expereinces with CPAP but now *I'M* beginning to get a little concerned. Surely I don't know enough about anything to be too critical but it has been quite a while now and you've still found no improvement. Seems it's making your sleep worse. I'm thinking maybe you need another machine or to work something out with your doctor and make sure your levels(?) are at the right number. Enough time as passed so that I hate to think you have to sit about and tolerate discomfort any longer than you have to. You never know just how bad you feel until you start feeling good. It's time for you to find out just how bad you feel. :) Time to start feeling good cutie.


Well, I have continued to wear the CPAP, though I still don't think it's doing any good, and if anything, it's keeping me up at night. Friday night I got so frustrated I took it off in the middle of the night and went back to sleep, and slept thru the night. Saturday night I didn't wear it at all, and had the best night's sleep I've had in weeks. Last night I wore it until nearly dawn. I don't know what I'm going to do tonight. I haven't made up my mind yet. I think it will depend on how I feel when I head to bed. I'm considering a different locale for my machine itself. Above me on a shelf under my window. It might be better for hose management.

I know, I know....you're all annoyed... :( ... I haven't given up yet...I'm just adjusting and working this out as best I can. I've had a stressful week...several things causing me grief, and I'm trying to stick with using the CPAP. I just need to get things straightened around. I hope that makes sense and you all understand. :)

Feel free to give encouragement, kudos, support, praise.... LOLOL... just kidding.... :D Thanks for all the kind words so far....it is truly appreciated.

[Zandoz]

I know, I know....you're all annoyed... :( ... I haven't given up yet...I'm just adjusting and working this out as best I can. I've had a stressful week...several things causing me grief, and I'm trying to stick with using the CPAP. I just need to get things straightened around. I hope that makes sense and you all understand. :)

Feel free to give encouragement, kudos, support, praise.... LOLOL... just kidding.... :D Thanks for all the kind words so far....it is truly appreciated.

Certainly not annoyed...just want to help any way I can. In the end, you have to do what works for you, regardless of anyone's opinions or experiences. For now, the best advice that comes to mind is to tell you to get back with the folks that got you the machine, and let them know your experience thus far. {{{{Violet}}}}

[Violet_Beauregard]

Lilly thank you so much! My original complaint to my doctor was fatigue, all the time. I was literally falling asleep at work, and in the chair at home while watching TV in the early evening. She insisted I get the sleep study, which I did. As I said, my apnea was diagnosed as very mild. I tried to explain to my doctor that I didn't think this was my problem. But, I didn't spend 8 years in medical school, she did. So, I thought I would try the CPAP. Honestly since my apnea was so mild I would have thought that the CPAP would have taken care of the fatigue fairly quickly. Maybe not overnight, but at least by now. I still do not think the problem was apnea. I'm going to try and stick with the machine until my next doctor's appointment, which is April. I want to give it it's just due and make an honest effort. I want to feel good too! Since my first complaints of fatigue and the initial sleep study, which was last fall, my fatigue has gotten better, but not because of the CPAP.

Sooo, thank you so much for your kind words of encouragement.... I'm hoping to get to the bottom of this yet still!! :)



I've been enjoying reading your posts and expereinces with CPAP but now *I'M* beginning to get a little concerned. Surely I don't know enough about anything to be too critical but it has been quite a while now and you've still found no improvement. Seems it's making your sleep worse. I'm thinking maybe you need another machine or to work something out with your doctor and make sure your levels(?) are at the right number. Enough time as passed so that I hate to think you have to sit about and tolerate discomfort any longer than you have to. You never know just how bad you feel until you start feeling good. It's time for you to find out just how bad you feel. :) Time to start feeling good cutie.

[Violet_Beauregard]

Thanks Zandoz..... I do appreciate it. As I told Lilly, I am going to stick with the machine until my next doctor's appointment in April. I want to give it an honest and thorough effort. I do thank you for all the info and advice though... it has been VERY helpful. It really makes a difference getting info and advice from people like you, Edgar and BBMe who are CPAP/BiPAP users. You all speak from experience, which is so helpful.

I'll keep giving updates.... who knows, I may end up writing a book about it!! :)



Certainly not annoyed...just want to help any way I can. In the end, you have to do what works for you, regardless of anyone's opinions or experiences. For now, the best advice that comes to mind is to tell you to get back with the folks that got you the machine, and let them know your experience thus far. {{{{Violet}}}}

[Ho Ho Tai]

. . . . My original complaint to my doctor was fatigue, all the time. I was literally falling asleep at work, and in the chair at home while watching TV in the early evening. She insisted I get the sleep study, which I did. . . .

Violet -

Re-reading the history of your experience, I think that (IMHO) the doctor's suggestion for an apnea study was very appropriate. However, I have to ask if she tested for, and ruled out, other factors which can cause similar symptoms. I'm thinking things like oxygen transport, hemoglobin, thyroid issues - possibly even mononucleosis. And that doesn't exhaust the possibilities - in fact, "exhaust" could even be one of them. If you have chronic exposure to low levels of carbon monoxide - say, from improper combustion in a household appliance (along with inadequate venting), a leaky muffler, or a lot of time spent in heavy traffic - the gas can bind with your hemoglobin more persistently than oxygen, and thus interferes with oxygen transport. In larger doses, this is how the gas kills. In small, incremental ones, it can produce symptoms superficially similar to what you describe.

But I'm not a doctor. I don't even play one on TV.

[imfree]

Violet -

Re-reading the history of your experience, I think that (IMHO) the doctor's suggestion for an apnea study was very appropriate. However, I have to ask if she tested for, and ruled out, other factors which can cause similar symptoms. I'm thinking things like oxygen transport, hemoglobin, thyroid issues - possibly even mononucleosis. And that doesn't exhaust the possibilities - in fact, "exhaust" could even be one of them. If you have chronic exposure to low levels of carbon monoxide - say, from improper combustion in a household appliance (along with inadequate venting), a leaky muffler, or a lot of time spent in heavy traffic - the gas can bind with your hemoglobin more persistently than oxygen, and thus interferes with oxygen transport. In larger doses, this is how the gas kills. In small, incremental ones, it can produce symptoms superficially similar to what you describe.

But I'm not a doctor. I don't even play one on TV.
I had a gas furnace with a cracked heat-exchanger. Fortunately, I caught it in time and replaced that furnace before it hurt us.Have gas
appliances inspected yearly.

[Violet_Beauregard]

Well, I do have a thyroid problem, but I've been treated for that for about 15 years. Other than that, she didn't really "test" for anything else. We went thru a battery of questions. As far as the other issues (venting, gas, carbon monoxide), I don't think they're the problem, but I'll check into them.

Thanks!!


Violet -

Re-reading the history of your experience, I think that (IMHO) the doctor's suggestion for an apnea study was very appropriate. However, I have to ask if she tested for, and ruled out, other factors which can cause similar symptoms. I'm thinking things like oxygen transport, hemoglobin, thyroid issues - possibly even mononucleosis. And that doesn't exhaust the possibilities - in fact, "exhaust" could even be one of them. If you have chronic exposure to low levels of carbon monoxide - say, from improper combustion in a household appliance (along with inadequate venting), a leaky muffler, or a lot of time spent in heavy traffic - the gas can bind with your hemoglobin more persistently than oxygen, and thus interferes with oxygen transport. In larger doses, this is how the gas kills. In small, incremental ones, it can produce symptoms superficially similar to what you describe.

But I'm not a doctor. I don't even play one on TV.

[Violet_Beauregard]

Well, I've continued with the CPAP for the last week and my results have been primarily the same. BUT, I did try something a little different last night. I tried an over the counter sleep aid (Tylenol PM and Tylenol Simply Sleep). I've had a monster headache for the last week or so, strictly stress related, so I took two Tylenol PMs last night and wore the mask, and I slept like a dream. It woke right up this morning and felt great all day. So, perhaps it's a matter of the extra help of the sleeping pill in combination with the CPAP.

BBMe, do you have any info on that? I think previously you asked me if my Dr. precribed Ambien. Zandoz, do you take anything like that, or know of anyone who does? Edgar, what about you??

[imfree]

Well, I do have a thyroid problem, but I've been treated for that for about 15 years. Other than that, she didn't really "test" for anything else. We went thru a battery of questions. As far as the other issues (venting, gas, carbon monoxide), I don't think they're the problem, but I'll check into them.

Thanks!!
Just be careful and take good care of yourself. Your cuteness
deserves to be around for a long time.

[Violet_Beauregard]

Thanks Edgar.... I'm sure trying!!! :)

You are just to good to me!



Just be careful and take good care of yourself. Your cuteness
deserves to be around for a long time.

[BigBeautifulMe]

Well, I know that sleep doctors often prescribe sleep meds when a patient first starts CPAP to help them adjust to it. But if you're not feeling better after all this time (after you really do seem to have adjusted to it), that COULD very well indicate that there's something else going on with your treatment. If it's a comfort issue (how the mask feels, etc) that's something you just have to keep tweaking til you get it right. :) But if you're sleeping adequate hours, and still not feeling rested, I would definitely be checking with your doc. :) Just my two cents.

[Violet_Beauregard]

Hmmmm.... well, I'm going to keep wearing the CPAP and maybe take the sleep aid a couple of times a week when I need it. I go back to the doc in about a month, so I'll see what she says then. As far as the comfort, I'm pretty much OK with it. It's a pain in the butt and I still hate the thing, but it's livable. I think more than anything, I'm just questioning whether it's doing anything for me. But, like I said, I'm trying to give it a fair chance before I completely throw in the towel.

Thanks for the info!!



Well, I know that sleep doctors often prescribe sleep meds when a patient first starts CPAP to help them adjust to it. But if you're not feeling better after all this time (after you really do seem to have adjusted to it), that COULD very well indicate that there's something else going on with your treatment. If it's a comfort issue (how the mask feels, etc) that's something you just have to keep tweaking til you get it right. :) But if you're sleeping adequate hours, and still not feeling rested, I would definitely be checking with your doc. :) Just my two cents.

[Zandoz]

Well, I've continued with the CPAP for the last week and my results have been primarily the same. BUT, I did try something a little different last night. I tried an over the counter sleep aid (Tylenol PM and Tylenol Simply Sleep). I've had a monster headache for the last week or so, strictly stress related, so I took two Tylenol PMs last night and wore the mask, and I slept like a dream. It woke right up this morning and felt great all day. So, perhaps it's a matter of the extra help of the sleeping pill in combination with the CPAP.

BBMe, do you have any info on that? I think previously you asked me if my Dr. precribed Ambien. Zandoz, do you take anything like that, or know of anyone who does? Edgar, what about you??

I take Tylenol's multi-symptom night time sinus med...the night time part of it is coincidental but effective...my main reason for taking it is the sinus part. When I lay down, within seconds my sinuses will stuff up, making breathing through my nose difficult to impossible without the meds. Another one of those "other issues" that have been alluded to.

[Zandoz]

I had a reminder night before last of just how much "externals" can effect sleeping with a CPAP/BiPAP. We went to see my adopted daughter graduate from nursing school, and had to spend a night in a hotel. My normally "works like a dream" setup was totally wrong for the bed/pillow/nightstand/headboard setup there. I was fighting my hoses, mask & headgear all night.

[VictoriaLeigh]

I noticed this thread and thought you experienced folks might have some ideas. About 3 months ago I did the sleep study thing and thay said instead of multiple short apneas I have only a couple really long one where my oxygen drops below 70 for over an hour each time. Anyone else have this? I new there was a reason why at 25 my energy was nil but had no clue. Also because my insurance bites, they won't cover the obnoxious CPAP anyway. And even if they did I'm one of those sleep with my mouth open types who needs a full mask, they want it up on 10, and I can barely sleep with anything on me(even a bandaid makes me nutz....lol) HELP :confused:

[BigBeautifulMe]

Victoria, if your oxygen is dropping that low for that long, that is doing SERIOUS damage to your body (really. That's QUITE bad). You of all people REALLY, really need a CPAP. Don't give up on it. I've never heard of anyone's insurance NOT covering a CPAP before - are you positive about that? I'm close to your age (28) and I've learned to live with it, and it has made my life SO much better. Just do it. If you truly do have to buy it out of pocket, buy it online, and not from a local place. MUCH cheaper. I like cpap.com myself. Full face masks are not that bad, as long as you find one that works well for you. If you can't, there's always the option of using a nasal mask and taping your mouth (which sounds scary, but works really well). You get used to it, it just takes some adjustment, and tweaking. But seriously, do it - otherwise, you're damaging your body every time you sleep (heart, lungs, brain, etc), and greatly increasing your risk of stroke, heart attack, etc. The longer you go without CPAP, the worse things are going to get for you in regards to side effects of untreated apnea. Don't let that happen.

Again, for everyone starting out with CPAP, cpaptalk.com is a truly great resource (it's a forum for users with LOTS of experienced users on it).

[Violet_Beauregard]

I'd follow up with your insurance company...put in an appeal from your doctor. That should help. Also, if you apnea is that bad, you really should wear the mask and use the machine. Believe me, I hate mine too, but I'm still working with it. You may have to learn to live with it, in order to save your life. BBMe can give you some GREAT advice... she knows a lot about CPAP.... she'll be a huge help to you!!




I noticed this thread and thought you experienced folks might have some ideas. About 3 months ago I did the sleep study thing and thay said instead of multiple short apneas I have only a couple really long one where my oxygen drops below 70 for over an hour each time. Anyone else have this? I new there was a reason why at 25 my energy was nil but had no clue. Also because my insurance bites, they won't cover the obnoxious CPAP anyway. And even if they did I'm one of those sleep with my mouth open types who needs a full mask, they want it up on 10, and I can barely sleep with anything on me(even a bandaid makes me nutz....lol) HELP :confused:

[VictoriaLeigh]

The dr is working on the appeal now, the problem with the insurance is they cover people who havean average 5 or more apneas a night, and since i have what the dr averaged at 3.5 they're giving me trouble. Figures they don't have a clause for how long your apneas are:mad: Why does everything have to be so damned difficult? Do any of you know what (other than weight loss) can help with this sleep apnea stuff? Thanks for your help so far ;)

[Zandoz]

The dr is working on the appeal now, the problem with the insurance is they cover people who havean average 5 or more apneas a night, and since i have what the dr averaged at 3.5 they're giving me trouble. Figures they don't have a clause for how long your apneas are:mad: Why does everything have to be so damned difficult? Do any of you know what (other than weight loss) can help with this sleep apnea stuff? Thanks for your help so far ;)

In my early stages, elevating the head end of the bed helped.

By the time I got done fighting my insurance company and got my first sleep test, the longest I would remain asleep was 113 seconds...that works out to 254 incidents in an 8 hour night. If you met the 5 criteria, they'd likely cook up some other tailor made rule to keep from paying out.

[VictoriaLeigh]

In my early stages, elevating the head end of the bed helped.

By the time I got done fighting my insurance company and got my first sleep test, the longest I would remain asleep was 113 seconds...that works out to 254 incidents in an 8 hour night. If you met the 5 criteria, they'd likely cook up some other tailor made rule to keep from paying out.

Thanks i'll give that a shot not sure how yet but I'll figured somethin out ;) And yeah you're probably right, anything to save them money and cause me crap.

[LillyBBBW]

How are things going now Violet? I have my initial sleep disorder consultation appointment today! We'll see what happens.

[imfree]

How are things going now Violet? I have my initial sleep disorder consultation appointment today! We'll see what happens.
I've noticed, myself, how dead this thread has been. Are you still using your CPAP, Violet, and how are things going. HUGGZZ, Edgar

[LillyBBBW]

Well, aside from me and imfree it doesn't look like anybody gives a crap about this thread anymore. :p But for what it's worth I had my consultation today and after being interviewed and examined by two separate people almost immediately both the interviewers ascertained that I had sleep apnea. So now I go back on the 19th of April for the actual sleep study to see how bad it is, but the doctor was talking about a bipap and not a cpap for me. Who knows?

Interestingly enough, I asked them about the auto cpap and she said that those tend to read too low and supply not enough pressure for people. Anyway, I don't get this vibe that they are just making up a disorder so they can give me unnecessary treatment and fleece the system. This is generally a great hospital with a fairly low quack record so we'll see.

[Violet_Beauregard]

Sorry all! I was cramming for finals and this poor little thread got sidetracked!!

How are things going now Violet? I have my initial sleep disorder consultation appointment today! We'll see what happens.

I've noticed, myself, how dead this thread has been. Are you still using your CPAP, Violet, and how are things going. HUGGZZ, Edgar


I'm still using the CPAP and it's basically the same. I'm definitely used to it now and my nose isn't nearly as sore. I still fight the hose and wake up several times in the night as I turn over (I'm a side sleeper), so I really wonder about its value as far as that, but I think I'm getting more used to it. I try not to allow myself to completely wake up when that happens. My energy level is....eh..... about the same...no real great energy surge. But as BBWMe has pointed out, it may still take some time for that to come up. I believe she said it took almost a year for her total results to appear...so, I'm attempting to be very patient (thought patience is NOT one of MY virtues...LOL)

Lilly I am SO glad you went for the consultation and are going to have the sleep test. It could really make a difference for you..your apnea may be more severe than mine. Edgar uses a BiPAP, he may be able to tell you more about it, as opposed to the CPAP. Or even BBWMe....she's very well versed on the whole topic. My apnea is very mild, so me seeing results could take a while I think. At least that's what I've gathered.

:) Thanks all for being patient with me, and I promise to keep the thread alive!! :)

Vi



Well, aside from me and imfree it doesn't look like anybody gives a crap about this thread anymore. :p But for what it's worth I had my consultation today and after being interviewed and examined by two separate people almost immediately both the interviewers ascertained that I had sleep apnea. So now I go back on the 19th of April for the actual sleep study to see how bad it is, but the doctor was talking about a bipap and not a cpap for me. Who knows?

Interestingly enough, I asked them about the auto cpap and she said that those tend to read too low and supply not enough pressure for people. Anyway, I don't get this vibe that they are just making up a disorder so they can give me unnecessary treatment and fleece the system. This is generally a great hospital with a fairly low quack record so we'll see.

[BigBeautifulMe]

Lilly, a lot of doctors still don't know much about how auto cpaps work nowadays. They base their opinions on how autos worked when they first came out - and they're totally different machines now. What she said is just not true anymore - and hasn't been since the early 90's. Most people DO get treated just fine with just plain CPAP - but since an auto can be set to function in straight CPAP mode, too, there's no harm in having one, and only using the auto mode when you think your pressure needs might have changed. That being said, it sometimes is challenging to get DMEs to supply them, and ins.companies to pay for them, even with the doc's RX. I was lucky - it was easy for me, because my ins. co. rented my CPAP, and so five months into it when I wanted to trade it out for an auto, it was no problem. I got my doc's RX, and there was no hassle at all.

Whatever you decide, learn all you can about apnea. It's important to do your own homework, as doctors and RTs in this area are woefully underinformed. (My RT at my DME never even told me there was more than one kind of mask - much less that there were DOZENS of different kinds out there). Good luck with your sleep study - let us know how it goes.

Violet - have you hung the hose up yet? That really helps eliminate fighting with the hose when you're tossing and turning. :) Glad you're getting used to things. :)

[Violet_Beauregard]

I have hung it, and it has helped. I put the whole machine on this shelf above and slightly behind my headboard. The head board is a couple of inches higher than the front of the shelf, to prevent it from being pulled onto my head. Doing that, and having the hose coming from above me like that helped out a lot. I think the problem is that I'm a side sleeper, but I'm adapting.

:)



Violet - have you hung the hose up yet? That really helps eliminate fighting with the hose when you're tossing and turning. :) Glad you're getting used to things. :)

[LillyBBBW]

The people I saw told me that the machine should be returned if you don't notice any results after about a month. I bought a brand new mobile telephone and had to return it just days after opening because it wouldn't work. Everyone could hear me on it fine but I could hear nothing but dead plastic. If your machine were faulty or malfunctioning you would have no way of knowing. I don't want to bully you as obviously you must do what's best. But I would seriously consider going back to your doctor and seeing about getting your machine replaced. It may be a manufacturers error and have nothing to do with you.

[Zandoz]

Well, aside from me and imfree it doesn't look like anybody gives a crap about this thread anymore. :p But for what it's worth I had my consultation today and after being interviewed and examined by two separate people almost immediately both the interviewers ascertained that I had sleep apnea. So now I go back on the 19th of April for the actual sleep study to see how bad it is, but the doctor was talking about a bipap and not a cpap for me. Who knows?

Interestingly enough, I asked them about the auto cpap and she said that those tend to read too low and supply not enough pressure for people. Anyway, I don't get this vibe that they are just making up a disorder so they can give me unnecessary treatment and fleece the system. This is generally a great hospital with a fairly low quack record so we'll see.

I'm kind of surprised that they are proposing a BiPAP before even doing a sleep study. As far as I know, the pressure required is not something they can tell reliably by visual examination....it takes trying different pressure levels to find what works for an individual. <shrug>

[BigBeautifulMe]

Zandoz, a BiPap is also often prescribed right off the bat for people with pre-existing lung conditions (like asthma) because its primary purpose is to help in exhalation. If they had reason to believe Lilly was going to have problems exhaling against the pressure, I could see them thinking she'd need one. But as strong as Lilly's respiratory equipment must be, given that she's an opera singer, I kind of doubt that. :) I don't know, though - I was trained as an opera singer for a while, and I still had problems exhaling against the pressure. But I was never a pro like Lilly. :)

Also, a BiPapST (a timed bipap device) would be prescribed for someone with Central Apnea, rather than obstructive. If they had reason to believe her apnea was central in nature, that would be another reason to be leaning towards a BiPap already.

I'm still wondering what their line of reasoning is - but in all honesty, BiPaps are very nice machines, and there's absolutely no harm in Lilly having one, even if she doesn't truly "need" one (as long as her insurance is picking up the tab, that is, as they are definitely more costly).

Lilly, I doubt that Violet's machine is defective. In two years on a CPAP message board, I've seen lots of people return their machines to their DMEs thinking they were "defective" because they weren't feeling better after a month. Every one of those machines worked properly. That's not to say it COULDN'T happen - just that it's a rarity. Vi, it wouldn't hurt to take it back to them and let them check it out, as Lilly said.

But the vast majority of people not feeling better after a month usually either have one of four things going on: mouth-breathing (which negates therapy), an uncomfortable mask they just aren't sleeping well with, having the wrong pressure prescribed, or just having a lot of sleep debt they need to make up for. Sometimes it's a combination of more than one thing. If my insurance were renting my machine (I can't remember if yours is, Vi) I would talk to my doctor and tell him I wasn't feeling better, and ask him to RX me a machine with data capabilities so that we could both make sure the prescribed pressure was working for me. If your doctor is not up to date on his knowledge and is very anti-auto, and you don't want to fight him/her on it, you can always ask for either a (Respironics) Remstar Pro2 (pre-M Series) or a (Respironics) Remstar M-Series Pro. Both of these machines provide straight CPAP (NOT Auto), but also provide full data (meaning you can see how many apneas you're having per night, if you're mouth breathing, if excessive leaks are interfering with treatment, etc).

If you want to give it some time, that's fine, but just make sure you don't wait too long to talk to your doc - insurance companies often rent-to-own machines (mine did) - so after a while, they buy it outright. Mine took more than six months to do that, but just in case - better to talk to the doc and insurance company sooner rather than later. Also, there are lots of side sleepers out there who do perfectly well with CPAP. So if you just can't keep this mask from leaking or get comfortable with it when you're on your side, it's probably time to look at different masks. You've already given it quite a good chance to work for you. :)

Good luck, Violet. We're all pulling for you.

[LillyBBBW]

I'm kind of surprised that they are proposing a BiPAP before even doing a sleep study. As far as I know, the pressure required is not something they can tell reliably by visual examination....it takes trying different pressure levels to find what works for an individual. <shrug>

I'm not sure why they came to that conclusion. They looked at my airway which was pretty small, noticed my tongue was fairly large and nearly obstructing the view of my tonsils, then the width of my neck and the description of my symptoms. The fact that I don't snore on my side and stomach yet I still feel the fatigue. Their assessment was merely a guess given what they've experienced in the past but no machine has been ordered as of yet. The test is April 19th and from then they will evaluate all things concerned and try to find the best fit.

When I initially made the appointment over the phone the lady asked me if I wanted the sleep disorder doctors in the pulmanary or neurology division. :blink: How the hell am I supposed to know? I chose pulmanary because I've had issues with blood clots in my lungs in the distant past. When they listened to my lungs they were congested from seasonal allergies which caused a bit of concern. This could wiegh in to why they are considering a BiPAP instead of a CPAP, I'm not sure. Also they know I'm a singer and made a referrence to wanting to evaluate the strength in my chest cavity to breath in and out so all if that comes into play. We'll just have to wait and see. They made it clear that nothing is written in stone, these are just some ideas and the tests will be important.

One thing I notice about the doctors at this hospital is that they are very vocal and communicative. They are not cocky or tight lipped as to what their educated guesses are even before test results are returned. They look you in the eye, tell you what they think and what's going to happen, listen to what you have to say and work with you to try and get to the bottom of things. The first doctor I met with spoke with me, wrote things down and examined me for about 30 minutes. Then she called in the guy who heads the whole thing up and in front of me, told my whole life's story to him including dates and time frames, no errors and completely from memory. *I* can't even remember the doctors' names. :blush:

[Violet_Beauregard]

I actually have a Dr. appointment with my family Dr. on Tuesday. She's the one who sent me for the sleep study. I'll talk with her then and see what she has to say. I don't think it's the machine... I think it's me... LOL



The people I saw told me that the machine should be returned if you don't notice any results after about a month. I bought a brand new mobile telephone and had to return it just days after opening because it wouldn't work. Everyone could hear me on it fine but I could hear nothing but dead plastic. If your machine were faulty or malfunctioning you would have no way of knowing. I don't want to bully you as obviously you must do what's best. But I would seriously consider going back to your doctor and seeing about getting your machine replaced. It may be a manufacturers error and have nothing to do with you.

[Violet_Beauregard]

Well, when I see the Dr. on Tuesday, I'll see what she thinks. Catching up on sleep debt might be it, but I'm not really sure. I don't think she'd be opposed to prescribing another machine...she's pretty good about everything.

I'll let you all know what happens on Tuesday...... :)




But the vast majority of people not feeling better after a month usually either have one of four things going on: mouth-breathing (which negates therapy), an uncomfortable mask they just aren't sleeping well with, having the wrong pressure prescribed, or just having a lot of sleep debt they need to make up for. Sometimes it's a combination of more than one thing. If my insurance were renting my machine (I can't remember if yours is, Vi) I would talk to my doctor and tell him I wasn't feeling better, and ask him to RX me a machine with data capabilities so that we could both make sure the prescribed pressure was working for me. If your doctor is not up to date on his knowledge and is very anti-auto, and you don't want to fight him/her on it, you can always ask for either a (Respironics) Remstar Pro2 (pre-M Series) or a (Respironics) Remstar M-Series Pro. Both of these machines provide straight CPAP (NOT Auto), but also provide full data (meaning you can see how many apneas you're having per night, if you're mouth breathing, if excessive leaks are interfering with treatment, etc).

If you want to give it some time, that's fine, but just make sure you don't wait too long to talk to your doc - insurance companies often rent-to-own machines (mine did) - so after a while, they buy it outright. Mine took more than six months to do that, but just in case - better to talk to the doc and insurance company sooner rather than later. Also, there are lots of side sleepers out there who do perfectly well with CPAP. So if you just can't keep this mask from leaking or get comfortable with it when you're on your side, it's probably time to look at different masks. You've already given it quite a good chance to work for you. :)

Good luck, Violet. We're all pulling for you.

[Zandoz]

Zandoz, a BiPap is also often prescribed right off the bat for people with pre-existing lung conditions (like asthma) because its primary purpose is to help in exhalation. If they had reason to believe Lilly was going to have problems exhaling against the pressure, I could see them thinking she'd need one. But as strong as Lilly's respiratory equipment must be, given that she's an opera singer, I kind of doubt that. :) I don't know, though - I was trained as an opera singer for a while, and I still had problems exhaling against the pressure. But I was never a pro like Lilly. :)

Also, a BiPapST (a timed bipap device) would be prescribed for someone with Central Apnea, rather than obstructive. If they had reason to believe her apnea was central in nature, that would be another reason to be leaning towards a BiPap already.

I'm still wondering what their line of reasoning is - but in all honesty, BiPaps are very nice machines, and there's absolutely no harm in Lilly having one, even if she doesn't truly "need" one (as long as her insurance is picking up the tab, that is, as they are definitely more costly).


I did not even think of the central vs obstructive thing...I have both, so one or the other has never been an issue for me.

I'm not sure why they came to that conclusion. They looked at my airway which was pretty small, noticed my tongue was fairly large and nearly obstructing the view of my tonsils, then the width of my neck and the description of my symptoms. The fact that I don't snore on my side and stomach yet I still feel the fatigue. Their assessment was merely a guess given what they've experienced in the past but no machine has been ordered as of yet. The test is April 19th and from then they will evaluate all things concerned and try to find the best fit.

When I initially made the appointment over the phone the lady asked me if I wanted the sleep disorder doctors in the pulmanary or neurology division. :blink: How the hell am I supposed to know? I chose pulmanary because I've had issues with blood clots in my lungs in the distant past. When they listened to my lungs they were congested from seasonal allergies which caused a bit of concern. This could wiegh in to why they are considering a BiPAP instead of a CPAP, I'm not sure. Also they know I'm a singer and made a referrence to wanting to evaluate the strength in my chest cavity to breath in and out so all if that comes into play. We'll just have to wait and see. They made it clear that nothing is written in stone, these are just some ideas and the tests will be important.

One thing I notice about the doctors at this hospital is that they are very vocal and communicative. They are not cocky or tight lipped as to what their educated guesses are even before test results are returned. They look you in the eye, tell you what they think and what's going to happen, listen to what you have to say and work with you to try and get to the bottom of things. The first doctor I met with spoke with me, wrote things down and examined me for about 30 minutes. Then she called in the guy who heads the whole thing up and in front of me, told my whole life's story to him including dates and time frames, no errors and completely from memory. *I* can't even remember the doctors' names. :blush:

The communicative thing is a big plus...with the exception of one doctor (and he retired after only a couple years) my doctors have been totally non-communicative all my life. All I know about most of the stuff that is supposed to be wrong with me is "The doctor said I have ____." A good example is something that came up with my new doc the other day. I was diagnosed with arthritis and "degenerative joint disease" about ten years ago...during that time I've had 3 doctors before this one. The original doc used both terms like it was two separate issues, and one each would talk about one or the other term (and to my uninformed view seemed to be ignoring the other problem). Wednesday was the first time I had a doctor actually explain that they were interchangeable terms for the same thing. Even after being diagnosed as diabetic, the only information I was given was essentially "cut out the sweet stuff and take these pills"...it was years before I knew that carbs in general were an issue...and that came from a conversation with another diabetic, not from the medical profession.

[LillyBBBW]

I did not even think of the central vs obstructive thing...I have both, so one or the other has never been an issue for me.



The communicative thing is a big plus...with the exception of one doctor (and he retired after only a couple years) my doctors have been totally non-communicative all my life. All I know about most of the stuff that is supposed to be wrong with me is "The doctor said I have ____." A good example is something that came up with my new doc the other day. I was diagnosed with arthritis and "degenerative joint disease" about ten years ago...during that time I've had 3 doctors before this one. The original doc used both terms like it was two separate issues, and one each would talk about one or the other term (and to my uninformed view seemed to be ignoring the other problem). Wednesday was the first time I had a doctor actually explain that they were interchangeable terms for the same thing. Even after being diagnosed as diabetic, the only information I was given was essentially "cut out the sweet stuff and take these pills"...it was years before I knew that carbs in general were an issue...and that came from a conversation with another diabetic, not from the medical profession.

Yes, I was getting the same treatment at the old hospital that my family favors. After years of being looked down upon disdainfully, and constatnly finding that their staff and diagnostic equipment was inadequate for testing people of size I switched to this new hospital. I've met a jerk or two at the new place, but overall the difference is unmistakable.

Recently my brother donated a kidney to my father. They treated my dad very well but were heinous towards my brother. They informed him of nothing. As he was recovering I went over to see him. He talked of his surgical wonds and I began to explain the incisions based on what I knew about gastric bypass and the possible reason his rib muscles were sore and spasming, making it difficult for him to sit up for long periods. He was so overwhelmed that he wept, NO ONE told him what was done to him or what to expect. He was having all kinds of physical reactions to what had happend to him during surgery and he didn't know if something was wrong, is he okay, will be be impaired for life, etc. Having never been in a hospital in his life he was very nervous. After surgery he had a fainting episode and called for help and no one came to him. When they did they flagged him off like he was nothing which left him very upset and with a sour taste. He kept quiet about his concerns because he didn't want to upset my parents, but to the people at the hospital he was merely a host body and nothing more. I Makes me so angry. :mad: I told him why I left that wretched hospital and he is considering doing the same. I told my brother that maybe not telling him what was going to happen was deliberate on the part of the hospital becasue they didn't want to frighten him into changing his mind, but honestly there is just no excuse.

[Violet_Beauregard]

Well, I'm seeing my Dr. tomorrow and plan to discuss the CPAP situation. I'll let you all know how it goes.....

:)

[LillyBBBW]

Good luck Violet!

[Violet_Beauregard]

Well the doctor visit went OK. I told her I didn't think the CPAP was doing much for me, and that I felt I slept better before. She asked me a lot of questions about the fit of the headgear and the machine itself. She was very good and said she felt that the fit was OK (which I tend to agree with) and that I just need to keep using it and get more comfortable with it. She said I just need to make it more routine and to the point of not even thinking about it. She did say that because my apnea is somewhat mild, that the results won't be overwhelming, and that it may take some time to see overly obvious results. She wants me to stick with it until I go back to see her in three months. She did say too, that being opposed to it mentally is part of my problem as well. She said that if it was something that I wanted to do, then I would be more prone to see the results more, as opposed to seeing the negativity. I can honestly say I agree with that.

Soooo, I just need to bite the bullet and stick with it... and... adapt! I'm going to keep trying. I'm also going to try to get rid of my negative attitude about the whole thing. I think that in itself will be a big help.

Thanks to all of you guys for your encouragement.... they have been tremendously helpful. I appreciate it so very much!! Thank goodness for my Dims friends!! :) :wubu:

[BigBeautifulMe]

Sounds like good advice, Violet. :) Attitude is a big part of it. Good luck, and stick with it (I know you will). :)

[Violet_Beauregard]

Speaking of Dims friends, BBMe, you have been my biggest supporter with the CPAP. I cannot thank you enough for all the info, advice and encouragement. :bow:

I promise to keep you filled in on my progress. Hugs to you for being a great friend.... ((((((BBMe)))))) :)


Now... onto the next patient... Lilly! :)


Sounds like good advice, Violet. :) Attitude is a big part of it. Good luck, and stick with it (I know you will). :)

[BigBeautifulMe]

Awww, thanks, Vi. :) I really do wish you well. Anytime you need help, I'm here. :)

[LillyBBBW]

Great update Vi! I'm actually chomping at the bit and can't *wait* to get mine. I'm so tired of being tired, I just want to start feeling better. If I had to wear a helmet and goggles I'd do it. :D I'm not allowed to drive until I get things straightened out.

By the way, what are you supposed to do if you catch a cold? Can you wear it while your sinuses are inflamed and/or runny?

[Violet_Beauregard]

I hope you have great results Lilly. Tired of being tired exactly describes the feeling.

You know, I'm not sure about what to do when you have a cold. I rarely get sick, so I've not had that problem. BBMe may have a better answer for you on that one. I know I make a point of blowing my nose before I put it on.

:)



Great update Vi! I'm actually chomping at the bit and can't *wait* to get mine. I'm so tired of being tired, I just want to start feeling better. If I had to wear a helmet and goggles I'd do it. :D I'm not allowed to drive until I get things straightened out.

By the way, what are you supposed to do if you catch a cold? Can you wear it while your sinuses are inflamed and/or runny?

[BigBeautifulMe]

Most insurance plans allow the purchase of 2 masks per year - I made sure one of those purchases was a full face mask. A full face mask covers the mouth and nose, and so allows you to breathe through your mouth without losing treatment pressure. This is what I use when I get a cold. :) This seems to work especially nicely for people who use a heated humidifier as well, as that often helps to clear congestion. My personal favorite is the Ultra Mirage Full Face mask. Of course, a full face mask isn't nearly as comfortable as nasal pillows, but I can put up with it for a few days when I'm sick and wouldn't be sleeping well, anyway. :)

Good luck, ladies. And Lilly - I was exactly the same way. I would've stood on my head in the shower if they'd told me it would get rid of the tiredness. :)

[imfree]

Middle Tennessee weather and vegetation aggravate many people's allergies. I have felt a considerable improvement in breathing and
BiPAP performance since I went on year-round decongestants and nasal spray a few months ago.

[Zandoz]

By the way, what are you supposed to do if you catch a cold? Can you wear it while your sinuses are inflamed and/or runny?

For me, if the sinus meds didn't cut through the crud, it's always been a matter of just wearing it anyway, and hoping something clears up in the night. I've found sleeping oon my side helps....gravity shifting crud sometimes clears the upside enough to help a bit.

I know I make a point of blowing my nose before I put it on.

That's part of my bed time ritual to...along with a dose od Tylenol multisymptom night time.

Most insurance plans allow the purchase of 2 masks per year - I made sure one of those purchases was a full face mask.

My insurance experiance has been the opposite...they won't pay for anything after the initial purchase. Filters, nasal pillows, hoses are all out-of-pocket.

Middle Tennessee weather and vegetation aggravate many people's allergies. I have felt a considerable improvement in breathing and
BiPAP performance since I went on year-round decongestants and nasal spray a few months ago.

What meds do they have you on? A couple of times the doc has given me nasal sprays like Rhinocort (sp), but they only seeem to work for about an hour...and stuff up the nose just creeps me out.

[imfree]

Hi Zandoz, I'm on Loratadine, decongestant and Fulnisoldide, nasal spray. They have provided clearing of breathing passages to the extent of
giving me great hope of being able to discontinue oxygen therapy after I see the VA pulmonologist in September.

[Violet_Beauregard]

I did find out my insurance plan will replace the nasal pillows, hoses and filters every three months, and head gear and a complete nasal mask replacement twice a year. The home health care place even gave me a sheet to sign and fill out and it's an automatic thing. I was pretty pleased with that.

Most insurance plans allow the purchase of 2 masks per year.

[Violet_Beauregard]

BTW, I have very good insurance....thank GOD!

[LillyBBBW]

BTW, I have very good insurance....thank GOD!

Amen to that. My doctor seems secure in the fact that my insurance carrier will cover anything deemed necessary. Let's hope she's right.

[Zandoz]

Hi Zandoz, I'm on Loratadine, decongestant and Fulnisoldide, nasal spray. They have provided clearing of breathing passages to the extent of
giving me great hope of being able to discontinue oxygen therapy after I see the VA pulmonologist in September.

Hmmmm...I don't think I've tried either of those, unless it was under another name. The Tylenol multi symptom night time works well enough, but only for about 5 hours. If I take a second dose I end up sleeping till almost noon. I guess since I have a new doc, it might be time to ask her about new alternatives.

[Violet_Beauregard]

GREAT! I know this stuff can be expensive....

Amen to that. My doctor seems secure in the fact that my insurance carrier will cover anything deemed necessary. Let's hope she's right.

[Zandoz]

I did find out my insurance plan will replace the nasal pillows, hoses and filters every three months, and head gear and a complete nasal mask replacement twice a year. The home health care place even gave me a sheet to sign and fill out and it's an automatic thing. I was pretty pleased with that.

BTW, I have very good insurance....thank GOD!

Must be nice...we've changed insurances several times in the last 5 years or so, and every one seems to opperate on the "It's not covered" standard.

Amen to that. My doctor seems secure in the fact that my insurance carrier will cover anything deemed necessary. Let's hope she's right.

Be very careful there. We recently got tagged for about $400 in stuff that the provider assured was covered, but was not. And as is the case with most providers, before they take you on you sign a bunch of incomprehensible legalese that says you pay for it if the insurance doesn't...regardless. Their telling you wrong is irrelevant to them. I was surprised the other day when my new provider called to schedule a test, and actually were up front about the fact that they thought it would be covered, but they do not look into my coverage...that's up to me.

[BigBeautifulMe]

Zandoz, I'm so sorry to hear your insurance company doesn't cover anything. I'm sure you probably have - but you've double-checked, right? I have really bad insurance - they hardly pay for anything - but even the basic policy I have covers two masks a year. If it was your medical supplier that told you they don't cover it, call your insurance company directly. I had my DME (medical supplier) tell me once that my insurance company wouldn't cover something, and I said "Actually, I'm positive they do, it's on the paperwork they sent me." The medical supplier double-checked, and sure enough, it was covered. I've also had the insurance company give me inaccurate information - I have to call and call and call sometimes before I get someone who actually knows what's going on. It's frustrating to say the least.

[Zandoz]

Zandoz, I'm so sorry to hear your insurance company doesn't cover anything. I'm sure you probably have - but you've double-checked, right? I have really bad insurance - they hardly pay for anything - but even the basic policy I have covers two masks a year. If it was your medical supplier that told you they don't cover it, call your insurance company directly. I had my DME (medical supplier) tell me once that my insurance company wouldn't cover something, and I said "Actually, I'm positive they do, it's on the paperwork they sent me." The medical supplier double-checked, and sure enough, it was covered. I've also had the insurance company give me inaccurate information - I have to call and call and call sometimes before I get someone who actually knows what's going on. It's frustrating to say the least.

The "not covered" comes from the insurance company. As far as the BiPAP stuff goes, all they will cover is the original purchase...all else is considered maintenance. I can get a whole new machine/headgear/mask set up...but only after we pay a monthly rent for a year that ends up being more than what I could buy the machine myself from one of the online outlets.

Basically everything outside of basic doctors visits and prescription meds requires months of fighting, and then it's frequently not covered...or covered so minimally that it's ridiculous. A good example is my diabetes testing supplies. We had been paying out of pocket...one day the pharmacist asked why we'd not gotten a prescription for them, because most insurances would cover them. We got the prescription...submitted it...the insurance covered a whopping whole $2.48...and we could only get half the quantity at a time.

[imfree]

The "not covered" comes from the insurance company. As far as the BiPAP stuff goes, all they will cover is the original purchase...all else is considered maintenance. I can get a whole new machine/headgear/mask set up...but only after we pay a monthly rent for a year that ends up being more than what I could buy the machine myself from one of the online outlets.

Basically everything outside of basic doctors visits and prescription meds requires months of fighting, and then it's frequently not covered...or covered so minimally that it's ridiculous. A good example is my diabetes testing supplies. We had been paying out of pocket...one day the pharmacist asked why we'd not gotten a prescription for them, because most insurances would cover them. We got the prescription...submitted it...the insurance covered a whopping whole $2.48...and we could only get half the quantity at a time.
Hi Zandoz, I've seen you mention "wound clinic". Are you a veteran? If you are, the VA would be able to help. If you're low-income, you
should be able to get government help with your diabetic supplies. I know you
have probably already investigated these possibilities, but I just wanted to
be sure, neighbor.

[Zandoz]

Hi Zandoz, I've seen you mention "wound clinic". Are you a veteran? If you are, the VA would be able to help. If you're low-income, you
should be able to get government help with your diabetic supplies. I know you
have probably already investigated these possibilities, but I just wanted to
be sure, neighbor.

Thanks for your concern. No, I'm not a vet. My wounds are from complications arrising from a combination of diabetes and venious stasis.

On the government help front, that's a building catch-22 situation...because I am insured under my wife's policy, medicare won't come into play...and my wife's employer is trying to institute a policy where for family members other than the employee, they won't cover if there is another insurance. In other words it's heading for the situation where neither will pay because of the other. <shrug>

[imfree]

Thanks for your concern. No, I'm not a vet. My wounds are from complications arrising from a combination of diabetes and venious stasis.

On the government help front, that's a building catch-22 situation...because I am insured under my wife's policy, medicare won't come into play...and my wife's employer is trying to institute a policy where for family members other than the employee, they won't cover if there is another insurance. In other words it's heading for the situation where neither will pay because of the other. <shrug>
Sorry to hear about the insurance, Zandoz. I'm with you on the stasis, mine's also diabetes-related. I've been having my Mom put ProFour compression bandages on my legs since Sept. last year. The VA has not yet sent me the XL size inner liners I need for my thereputic compression stockings.

[Zandoz]

Sorry to hear about the insurance, Zandoz. I'm with you on the stasis, mine's also diabetes-related. I've been having my Mom put ProFour compression bandages on my legs since Sept. last year. The VA has not yet sent me the XL size inner liners I need for my thereputic compression stockings.

I sent you a PM, so we do't get this thread any farther off topic...LOL.

[LillyBBBW]

I have a question. I have constant struggles with my sinuses. Is there a connection between frequent sinus disturbances and sleep apnea?

[Zandoz]

I can't say what the official line is on this, but to my mind, anything that would obstruct breathing would be a contributor.

[Violet_Beauregard]

I would have to agree with Zandoz on this one.... it would make sense to me....

I have a question. I have constant struggles with my sinuses. Is there a connection between frequent sinus disturbances and sleep apnea?

I can't say what the official line is on this, but to my mind, anything that would obstruct breathing would be a contributor.

[imfree]

I would have to agree with Zandoz on this one.... it would make sense to me....
Year-round decongestants and nasal spray are helping me.
Middle Tennessee causes a lot of people allergy problems, though.