CPAP - new user.....

[ohiofa]

Hi BBM,
I've been using it religously since February of this year. I do use a mask that goes over my mouth and has two prongs that go up to my nostrils. I had the mask that went over both your nose and mouth and couldn't handle it. I think though that I breathe at night through both my nose and mouth...if that makes sence.

[BigBeautifulMe]

You sound a lot like me. Doing everything to make your therapy work.. no results. I kept telling my sleep doc I thought I hadn't been titrated properly - he refused to listen. Finally I went around him and went to my GP and asked for an Auto CPAP that would automatically adjust my pressure and tell me how many apneas I was having. They titrated me at 6... I needed 11-12. HUGE difference when the range is only 4-20. If you're still not feeling well... and you're not having a lot of mask leaks.... don't just accept "there's nothing we can do for you," do what you can to get a machine that will give you useful data and find out exactly what is going wrong. Just my two cents.

[LillyBBBW]

Originally Posted by BigBeautifulMe

You sound a lot like me. Doing everything to make your therapy work.. no results. I kept telling my sleep doc I thought I hadn't been titrated properly - he refused to listen. Finally I went around him and went to my GP and asked for an Auto CPAP that would automatically adjust my pressure and tell me how many apneas I was having. They titrated me at 6... I needed 11-12. HUGE difference when the range is only 4-20. If you're still not feeling well... and you're not having a lot of mask leaks.... don't just accept "there's nothing we can do for you," do what you can to get a machine that will give you useful data and find out exactly what is going wrong. Just my two cents.

A GP can do that?

[BigBeautifulMe]

Yep. As long as you've had a sleep study and titration, any doc can Rx a machine for you. Though I don't know that I'd try, say, a gynecologist. LOL. Whether or not they WILL is another matter - but after I explained to my GP I'd been 100% compliant for months and still felt terrible and my sleep doc refused to help me, and showed up with research on the machine I wanted, she was happy to help me.

[LillyBBBW]

Originally Posted by BigBeautifulMe

Yep. As long as you've had a sleep study and titration, any doc can Rx a machine for you. Though I don't know that I'd try, say, a gynecologist. LOL. Whether or not they WILL is another matter - but after I explained to my GP I'd been 100% compliant for months and still felt terrible and my sleep doc refused to help me, and showed up with research on the machine I wanted, she was happy to help me.

LOL! I'm curious what your sleep docs reaction was to this? Any commentary on the apparent improvements you made by moving past him/her?

[BigBeautifulMe]

I never went back to him after he refused to admit there was a possibility the sleep lab he worked with had messed up my titration. Any doctor who refuses to believe mistakes are possible is a dangerous doctor to have.

[LillyBBBW]

i*BUMP*!

AYE CARUMBA!! I have been feeling SO FANTASTIC lately!! I just assumed it was because of this new way of eating I've been following and didn't think any more of it. But over time I have been feeling better and BETTER! Man I can't even describe. My groove/swagger is BACK in a HUGE way. Over the last week or so I fell off the wagon with my eating habits and still... I feel like a million bucks. I jumped on the scale and weight 4 pounds more than I did last time. :-/ I'm starting to think that way of eating may have nothing to do with my improved state. Ever since I went back and had that sleep study I've been taping my mouth closed at night with the cpap. I was allergic to the tape so I went out and bought some for sensitive skin and have been using it religiously. OMG, I think it's the bullet! I feel like the sexay beeotch I was 10 years ago!

omg. Go get a cpap. I swear. Even if you don't NEED one.... GET A CPAP! RUN!!! Every American should have one. I'm writing a letter to congress.

[BigBeautifulMe]

LOL! Yay, Lilly! Not mouth-leaking is sooo important to treatment. 'swhy I won't shut up about it. If the air leaks out of your mouth, it's not keeping your airway open and you're not getting treatment. As you can now testify to. I'm sooooooooooo glad it's working for you! Here's hoping you and your new best friend have many long, happy years together. lol.

[Risible]

That's great, Lilly! I'm glad you found the magic bullet to your CPAP experience - with me it was the face mask, as opposed to the nasal mask I was started with. Have you tried a full-face mask? It's no picnic, but the tape doesn't sound fun, either.

I have to say, I've been using the CPAP since April and I feel a very noticeable improvement in my energy level (still low, but at least I have some!). I'm also working on getting my diabetes under control, so between the good sleep and the lower blood sugars I'm feeling so much better. Just got back from a camping trip, during which I had a great time; in the past the trips have wiped me out, was barely able to function.

[LillyBBBW]

Originally Posted by Risible

That's great, Lilly! I'm glad you found the magic bullet to your CPAP experience - with me it was the face mask, as opposed to the nasal mask I was started with. Have you tried a full-face mask? It's no picnic, but the tape doesn't sound fun, either.

I have to say, I've been using the CPAP since April and I feel a very noticeable improvement in my energy level (still low, but at least I have some!). I'm also working on getting my diabetes under control, so between the good sleep and the lower blood sugars I'm feeling so much better. Just got back from a camping trip, during which I had a great time; in the past the trips have wiped me out, was barely able to function.

Yes, the preliminary conclusion is that I need a full face mask. I had the sleep study but I have to wait a few weeks before all the results are compiled so that I can see my doctor and obtain the final analysis. I expect then he is going to prescribe a full mask but till then I have been working with the tape to see what it does. Stupid me I didnt put two and two together till today. I couldn't figure out why I was feeling so damned good all of a sudden. I truly believe it's the tape. My appointment with the sleep doc is December 11 which I felt was too long to wait so I started with the tape over my mouth the moment my sleep study was over. Guess I'll be 'sticking' with it!

[olwen]

Count me in as someone who's feeling better because of the CPAP. We should have have a party. I actually wake up in the morning and I'm not stiff or in total pain and I have energy to get thru the day, my brain isn't foggy. I'm honestly shocked at the improvement. It's crazy.

[Risible]

Originally Posted by olwen

Count me in as someone who's feeling better because of the CPAP. We should have have a party. I actually wake up in the morning and I'm not stiff or in total pain and I have energy to get thru the day, my brain isn't foggy. I'm honestly shocked at the improvement. It's crazy.

I feel the same way, Olwen. When I started using it regularly with the full face mask, I thought I'd never get used to it - the mask felt claustrophobic, the straps are uncomfortable, having to be mindful of the tubing, the fear of the machine losing power while in a deep sleep and suffocating (I don't have that fear anymore; turns out, I can still breathe with the mask on and tubing connected and the machine off). Now I can't sleep without my CPAP for fear of the OSA! Now my fear is - what if my machine breaks and I have to do without it?

It is crazy!

[BigBeautifulMe]

That's why I have a backup machine, Ris. I have the same fear. When I switched insurance companies I learned my new company would cover a new cpap right away. So even though my old one was only 3 years old (usually ins. companies will only pay for a new one every FIVE years) I got a new one, and now I have a working spare should anything ever happen to this one. I realize I'm very fortunate that I have insurance and not everyone does. I'm grateful.

[Risible]

I believe my insurance covers a new one every five years; new mask twice a year.

Now I know what I want for Xmas.

[BigBeautifulMe]

What I love is when people say "I think CPAP is addictive. It's like a drug. Isn't it dangerous, that you get so dependent on it?" My answer is "Are you addicted to breathing during the day? Why would you be any less addicted to breathing at night?" lol.

[Risible]

CPAP - the new addiction. Guess I'd rather give up chocolate, myself ...

[JerseyGirl07093]

What type of tape do you use Lilly? My mouth is always opening at night. I know I probably need to get a new sleep test too. I have a mask that goes over my nose only and I love it, if only I could get my mouth to stay shut! I have a chin strap that is supposed to keep my mouth closed but it doesn't really do much.

[BigBeautifulMe]

Yeah, chin straps are useless for MOST people unfortunately (not all, of course - but most).

Johnson & Johnson 1" medical tape worked for me back when I taped. Not sure what Lilly uses.

Make sure you don't use duct tape, though. It SHOULD go without saying, but...sometiems it doesn't. LOL

[olwen]

Originally Posted by Risible

I feel the same way, Olwen. When I started using it regularly with the full face mask, I thought I'd never get used to it - the mask felt claustrophobic, the straps are uncomfortable, having to be mindful of the tubing, the fear of the machine losing power while in a deep sleep and suffocating (I don't have that fear anymore; turns out, I can still breathe with the mask on and tubing connected and the machine off). Now I can't sleep without my CPAP for fear of the OSA! Now my fear is - what if my machine breaks and I have to do without it?

It is crazy!

I've only had mine for a little over a week and I've already had that what if it breaks fear, especially since i was travelling with it. I almost left it behind twice and panicked a little each time.

I'm also finding the nasal mask rather comforting, and I am starting to have an established sleep ritual, which I never ever had before. It's forcing me to try to plan out my day better and I look forward to sleeping in a different way than I did before, tho I can't quite explain the difference...

[Risible]

I think I mentioned this before ... but speaking of CPAP Love, one of the things I love most about my CPAP experience? My dreams - they're ever so much more warm and friendly. Sometimes when I wake up, I want to withdraw back into them.

By the time I finally started using my CPAP, after getting the full face mask, my dreams were frequently nightmares, with suffocation and drowning type dreams occurring several times a week. They were scawy. Fortunately, they're a thing of the past.

[LillyBBBW]

Originally Posted by JerseyGirl07093

What type of tape do you use Lilly? My mouth is always opening at night. I know I probably need to get a new sleep test too. I have a mask that goes over my nose only and I love it, if only I could get my mouth to stay shut! I have a chin strap that is supposed to keep my mouth closed but it doesn't really do much.

I bought some bandage/gauze tape from CVS for sensitive skin. At first I was using bandaids but my skin was reacting badly to those. This paperesque tape for sensitive skin seems to do the trick though. I purse my lips together, apply the tape and then relax and this seems to hold.

Although I must say of late I've been feeling like crap again. *sigh* I don't know what it is. My allergies are terrible and for a week or so I haven't been taking my medication for it because I ran out. I'm wondering if maybe my sinues have something to do with the lapse in feeling better? But yeah, for a while there I was springing out of bed with a whole lot less aches and pains. Now I'm falling asleep on the subway agian.

[olwen]

Lilly you bring up something I've been meaning to ask about. What does everybody who uses the nasal mask/pillows do to open their sinuses? I've been taking cough medicine at night before bed, and that actually works, but I don't think I can keep that up for long. I'm not at all familiar with nasal spray and I've heard some things about some nasal sprays ruining your nasal passages, tho I can't remember which ones at the moment...

[LillyBBBW]

Originally Posted by olwen

Lilly you bring up something I've been meaning to ask about. What does everybody who uses the nasal mask/pillows do to open their sinuses? I've been taking cough medicine at night before bed, and that actually works, but I don't think I can keep that up for long. I'm not at all familiar with nasal spray and I've heard some things about some nasal sprays ruining your nasal passages, tho I can't remember which ones at the moment...

My doctor prescribed for me some kind of steroid nasal spray, I can't remember what it was. I never filled the prescription because I feared the same thing about becoming dependent or the stuff might simply stop working after a while. What helps me is nasal saline, like Ocean Nose. That stuff is gawd awful but it does open my nasal passages in about an hour or so. I've also used it to stave off a cold or limit it's scope of carnage at the first sign. Good stuff. That and Sudafed, the hard stuff.

[olwen]

Originally Posted by LillyBBBW

My doctor prescribed for me some kind of steroid nasal spray, I can't remember what it was. I never filled the prescription because I feared the same thing about becoming dependent or the stuff might simply stop working after a while. What helps me is nasal saline, like Ocean Nose. That stuff is gawd awful but it does open my nasal passages in about an hour or so. I've also used it to stave off a cold or limit it's scope of carnage at the first sign. Good stuff. That and Sudafed, the hard stuff.

thanks. I'm gonna look for that nasal saline stuff.

[Risible]

Originally Posted by olwen

Lilly you bring up something I've been meaning to ask about. What does everybody who uses the nasal mask/pillows do to open their sinuses? I've been taking cough medicine at night before bed, and that actually works, but I don't think I can keep that up for long. I'm not at all familiar with nasal spray and I've heard some things about some nasal sprays ruining your nasal passages, tho I can't remember which ones at the moment...

While my CPAP has a humidifier, I don't use it; I did to begin with but quickly found the "rainout" (I think that's what it's called?) was a bigger problem for me then dry mouth, so I stopped using it.

I can go to bed with a stuffy nose, but at some point the stuffiness clears up (I guess my nasal passages dry out without the humidifier going) and I'm able to breathe through my nose. However, I haven't been sick with a cold or congestion-type problem since I've been on the CPAP, so I don't know how my sinuses will react under sick conditions.