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Old 10-18-2016, 01:12 PM   #1
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Default So, I had a stroke.

And nobody knows why it happened, nor exactly when it happened. The official diagnosis is a silent cryptogenic stroke in the right parietal lobe.

Silent meaning that I didn't recognize when it was happening and it didn't leave any obvious stroke related changes in my mental and physical abilities, just some vague weakness and brain fog I blew off as caused by aging and other illnesses. Cryptogenic because I have no distinct risk factors and the only 2 possible risk factors can't be proven as the cause, so nobody can say why it happened. And it was a stroke, not a TIA, or "mini stroke". There is a pretty big piece of essentially dead space in the right parietal lobe of my brain now.

I found out in mid August when I went to the ER after having an episode where I couldn't move or speak for a few minutes and then had what appeared to be a small seizure. It wasn't a seizure, and nobody ever figured out what it was, but while I was being checked out, they did a cat scan, found an abnormal spot in my brain, and packed me off in an ambulance to a major hospital with a big neuroscience program for further evaluation. They did an MRI and discovered the stroke. Now, they can tell if a stroke is recent or old. Recent meaning 48 hours or less, old meaning anything before that. Days, weeks, months, and potentially years. Nobody really knows.

I don't currently have any distinct risk factors. Not a smoker, only 46, no sleep apnea, blood pressure is normal, blood glucose under tight control, healthy heart. Slightly elevated heart rate, but not high enough to amount to anything. But I did have shingles earlier this year, and the virus can temporarily raise stroke risk. However, the weakness and brain fog go back a lot farther than that, so they don't believe it was the cause. Also I could have atrial fibrillation, but of a type that only causes an episode months to a year or more apart. It's a cause in a fairly small percentage of cryptogenic strokes and hardly ever caught on wearable heart monitors because you only wear them for a short while. I wore one for the days I was in the hospital, then 2 weeks at home and nothing at all out of the ordinary happened.

Right now, the plan is to implant a tiny cardiac monitor under my skin next week to try and catch a rare afib episode. It's a long shot, but if they catch one, they can put me on a different anticoagulant drug that will greatly improve my chances of preventing a disabling or fatal second stroke caused by afib. The monitor stays in for 3 years. If it catches nothing abnormal, then I continue to keep on top of my health and hope for the best and never know what caused the stroke.

Needless to say, the unknowns have been a mindfuck of monumental proportions. Nobody knows when, why, or how I avoided serious impairments given the size and location of the stroke. I don't like unknowns, I need to know what I'm dealing with. It's sent my anxiety through the roof, and I've been having to manage that as best as I can.
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Old 10-18-2016, 01:28 PM   #2
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Wow. So 1) I’m glad you are doing well, considering all the possibilities around a substantive stroke! But 2) Holy cow I can imagine the mind-fuck and anxiety from something like that would be crazy. Best wishes on both good health and lack of events going forward and on finding a way to live with this without it just chewing you up.

Oh, and 3) I do hope that you can pop in periodically, despite the stress – we’re going to want to know that you are still OK!
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Old 10-18-2016, 06:49 PM   #3
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Glad to see you back Tracy
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Old 10-19-2016, 01:10 AM   #4
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Wow, that is shocking news for you, I'm not surprised you are anxious about this. It would seem from the prolonged brain fog/weakness that it probably happened some time ago and your brain has adapted to work around the dead space. Which means your brain function is at least likely to be stable barring another stroke. Hopefully they will be able to catch an afib episode and put you on the appropriate medication for that.

As far as you avoiding serious impairments, a lot of it honestly seems to come down to luck. My mother had a sudden, large brain aneurysm a couple of years ago, the type that kill 40% of people immediately, and she survived with no long lasting effects from it. And nobody knows why/how she recovered so well. But at least now they have found out that you had a stroke they will be able to hopefully put steps into place to prevent you having another one.

I wish you the best of luck with your health and hope it improves over time.
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Old 10-19-2016, 02:02 PM   #5
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Thanks for the welcome back and replies. I promise I won't be a stranger.

From what I was told by the neurology team at the hospital I was evaluated at, I just got lucky. The stroke hit in an area of my brain that doesn't control any major functions. Had it been just a little bit over in any different direction, the outcome would have been much different. It probably happened in my sleep and that's why I didn't know it even happened. I probably felt pretty bad for a day or so, but the second half of 2015 and so far 2016 have not been good times health-wise. That and the fact that I have no risk factors, I would have never thought stroke was a possibility and just blown it off to whatever I was dealing with at that particular time. Whatever was going to happen, happened, and I won't have any further damage from this stroke. The goal now is to prevent another. I'm managing all the risk factors that can be managed and on a preventative dose of an anticoagulant too. The odds are in my favor but this is something I will have to be diligent about the rest of my life.

I do remember going to my primary care doctor multiple times and saying "I just don't feel well, something's not right". They did extensive lab work and never came up with anything definitive. It could be stress, the start of perimenopause, whatever illness I was dealing with. There was some minor inflammatory response stuff, but the test was ran right before I came down with shingles, so that could explain it. Followup specialized tests for autoimmune disease all came back negative or right on the border of normal/abnormal so I haven't pursued that angle any further as of yet. I will eventually though.

The anxiety has been the worst part. About ten days after I got out of the hospital, one of my cats died and that night I woke up from a sound sleep having such a massive panic attack that I thought I was having a heart attack and had to go back to the ER. Because of the stroke, I was referred to a cardiologist and went through a lot of tests. All normal, except for a slightly elevated heart rate they say is caused by the anxiety, so they are treating me for that.

Next week (I hope) I get the heart monitor implanted and I think that will give me a lot of peace of mind. It's called a LINQ monitor, and it's very tiny, a third the size of an AAA battery, and the procedure to implant it takes a few minutes and they don't even sedate you. It'll take longer to prep me than to actually do the procedure.

Once all the medical stuff is over with, I go back to a neurologist, get evaluated again, cleared to drive and return to normal activities again, and hopefully just get on with life. I will need to start counseling for the anxiety as soon as I can, but I will be honest, the copays for all the medical stuff are really cutting into the budget, so the best I can do right now is a CD with breathing exercises, and guided meditations for panic attacks and anxiety. It does help a lot but I think working with an actual human being one on one will help more.
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Old 10-22-2016, 05:05 AM   #6
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Hi Tracy! So glad you avoided a traumatic injury. How scary!! Fingers crossed it was a one time thing only and it'll be smooth sailing from here on.

Sending positive vibes since it couldn't hurt, right? Hugs!
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Old 02-08-2017, 12:53 PM   #7
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One wonders how your are doing three months later.
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Old 02-08-2017, 04:10 PM   #8
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I see Tracy posting in the exercise thread- and she seems to be making progress!
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Old 02-08-2017, 04:47 PM   #9
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Quote:
Originally Posted by Green Eyed Fairy View Post
I see Tracy posting in the exercise thread- and she seems to be making progress!

Wonder what she will tell us..
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Old 02-08-2017, 09:02 PM   #10
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Hi, I posted about my followups with my cardiologist and neurologist, but here's the current situation.

With a stroke, the damage that will be done, is done when the stroke happens. So, unless I have another stroke, I'm only dealing with the deficits I already have. Physically, I have minor weakness on my left side (stroke was on the right side of my brain). If I stand or walk too long, my left foot starts to drag a little bit, and I get a lot of pain in the muscles on the left side of my lower back. I also lost some hand strength in my left hand. Not much though. It's just a little bit of a strain to hold heavy things and use tools with that hand. Mentally I'm struggling with a lot of fatigue and my sleep schedule is off. So I sleep a bit at night and then take a nap during the daytime. Both are really common after a stroke. Not sure how long it'll last, no way to know.

They still don't know what caused my stroke. My heart monitor hasn't recorded any atrial fibrillation episodes yet, so that's still a possibility they can't confirm or rule out. It could also have been a result of being at increased risk following a shingles infection this past spring, it could have happened years ago when I had multiple distinct stroke risk factors, or it could be due to some factor that is completely unidentifiable. Sometimes there isn't any identifiable cause. The neurologist said that unless the monitor catches an afib episode, we'll never know what caused it. And all I can do is manage risk factors we know about.

As far as any kind of therapies, I don't need physical therapy so they just want me to walk at least a mile through the course of a day and try and be active throughout the day to keep my stamina up. Also, being sedentary makes my blood pressure drop and causes hypotension related dizziness when I stand up. Mentally my brain is functioning well enough that I can drive, use machinery, etc... I have issues with bright lights at night bothering me so they don't want me driving at night if I can avoid it. I have occasional bouts with brain fog, like not being able to remember the correct word for something or having to stumble through putting a sentence together verbally. I'm very sensitive to bright light and loud sounds, so I don't spend as much time out in crowded places now.

My face is a little bit wonky, one eyebrow is higher than the other. I'm thinking about getting bangs cut in my hair again to camouflage it because it bothers me when I see it in photos or in the mirror.

I'm starting to work from home a bit, doing crafting. Things I can work around the fatigue with. I don't know if I can manage doing the craft show circuit on my own again, but I am going to try out a couple of small local church and community sponsored shows this spring to see how I manage. I'll probably do most of my sales through my etsy store and directly to individuals.

That's about it. Fatigue is the biggest issue right now. I want to be more productive but don't have enough energy to accomplish much. I'll have the last of the things I need to start production with my crafting in place this weekend, so maybe I can really make something out of that.
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Old 02-09-2017, 11:52 PM   #11
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Default So young for such physical carnage . . . .

Hi Tracy. I read and re-read your posts. I have seen lots of people (some close relatives) who had strokes and/or heart attacks but none had both these assaults at such a young age. Plus, you rose up, came thru both potentially deadly storms like a warrior (a wounded warrior) but a role model nonetheless.

In my book, you are like the "Mother of Dragons" on HBO's show Game of Thrones. That character was thrust into a burning tent so he could follow her dead husband and newborn baby into death or the next world. Her tribe also burned 3 dragon eggs in the same inferno. The next day after the fire died out, she walked out - unhurt and was carrying three hatched baby dragons. The lady is now "kicking ass and taking names" in the mythical, but fierce world.

Back to real life. My mom worked as a RN and carried me with her when she went on visits to relatives & friends getting over strokes & heart attacks. Then I learned other facts myself. (Many do not apply to you, but it may help another reader.)

In Jackson, MS healthcare workers handed out free "heart attack kits" to older people. It was a large size empty pill bottle containing several essential things. A adult dose of real aspirin with a large print note. Upon chest pain, or arm pain or feeling your heart is in trouble first take the aspirin. Chew it, dry swallow it or keep it under your tongue and use the phone to call 911.

If you think you are having a heart attack, do not drive. I have relatives trying to drive during that time and crashed their car. You could very well likely kill yourself and/or injure others. My father's genetic line (which includes me) have massive heart attacks with "no survival".

If you frequent places with others, try to get them have an external defibulator that is programmed with verbal instructions for use. This would include churches, schools, assembly halls, etc. Start a fund drive to purchase one if needed.

Now, stroke survival facts - learn the three warning signs of strokes. Ask the person to:
1. Raise both hands over their head. Stroke victims most likely cannot raise both hands equally.
2. Ask the make a big smile. Again, stroke victims likely cannot smile evenly. One side of their mouth will droop.
3. Ask them speak a simple phrase - stroke will slur their voice.
3. Look at their eyes. Ask them to look up and down and look right and left. One eye in stroke victims may droop or eyes cannot move the same way.

Another possible stroke risk is blood clots (some are very tiny) from previous accidents or surgeries. That's why after surgery they fit most people with white TED hose and/or compression devices that gently squeeze legs up and down while in bed. You can also "throw" clots from sitting too long without getting up and moving or walking. Stroke occur when tiny clots are carried to the brain.

I vividly remember the day my mother created blood clots in her own legs. I was in junior high and we were on a family trip (about) 6 hours to visit her kin. Before we left to drive back, mom and dad had a bad fight
and mom would not sit on the seat with him. She sat on the back seat, on the hump, and would not eat, drink or get out of the car until we were home. She walked out of that vehicle with blood clots in both legs. She was prescribed warfarin (also called coyote killer). She spent about 45 years taking this poison to keep her blood thin and stabilize the clot movement.

(Warfarin was called "coyote killer" because when ranchers found dead sheep on their ranch, they would load the body with warfarin and when the coyote can back for seconds, he would eat and die from internal bleeding. Warfarin has also been used to kill mice using baited traps (in homes and industrial locations,)

---------------------------------------------------------------------------------

Now that I have wandered way off course, back to one or two other suggestions for what may come . . . . I too have trouble driving at night which gets even harder with rain. When I have to do this, I try to find a friend, neighbor or hire a helper to come with me. If conditions with my eyesight get too bad, they can drive.

And Tracy, my hat is off to you again I lived in Houston, TX for five years. Driving in that city is horrible, I remember the loop have 6 or 8 lanes going in one direction. Everyone drives like crazed ferrets and most of the loop are 12 lanes counting two directions, Just thinking about it gives me shivers.

One more thing, I don't see how you can walk a mile in Houston's heat & humidity. That stuff is like walking in Indian sweat lodge. Are pools available to walk in? Could you qualify for that assistance from insurance, medicare or medicaid? You should get help now that you are disabled.
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Old 02-21-2017, 12:23 PM   #12
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Sorry it took a while to reply, I've been helping work on starting to get ready to move later this year and have been wearing myself out a lot. Managed to help empty both attics over the weekend and organize the garage into stuff to keep, stuff to sell, and stuff to trash. In the process, I learned that my limitations have moved forward a few notches, which is good. But that if I do a lot of physical work in a day I end up having to mostly rest the next day, which isn't so great.

They don't think I'm at risk for a heart attack, the only thing that happened with my heart was a tachycardia episode during a massive anxiety attack and ongoing slightly elevated heart rate, which is nothing new for me, and probably related to general anxiety disorder. I like the idea of a heart attack kit, and will definitely talk to my cardiologist about whether or not I should carry emergency aspirin, and what dose. I take a low dose of Plavix now and the neurologist said it was sufficient to lower my stroke risk unless they find evidence of atrial fibrillation, in which case they'll switch me to a stronger anticoagulant.

The stroke warning signs, they taught my husband how to check me, and taught me how to check myself in the mirror. One of the bad things is that my anxiety attacks are very physical and some if the symptoms mimic stroke symptoms. Numbness, tingling, headache, weakness in hands/arms that might only affect one side. Same with the antidepressant medication I take, side effects include unusual cranial sensations like pressure and numbness. It might feel like one side of my face is numb but if I look in the mirror, it works fine. At least once a week I freak myself out thinking I'm having another stroke, check for symptoms, realize it's just anxiety, pop a Xanax, and feel fine in a half hour. Thankfully the anxiety attacks are happening fewer and farther inbetween now. Breathing and meditation exercises help a lot.

Even though I take the Plavix, I get up and walk around about every hour while I'm awake to prevent blood clots, but also to keep my blood pressure up so I don't get dizzy when I stand up. The medication I take to bring my heart rate down also brings my blood pressure down, and it wasn't high to begin with so I sometimes get hypotension related dizziness if I sit too long. I haven't had any long road trips or any flights yet, but will have to make sure to be able to walk around and stretch my legs if I do.

Yeah, I really don't want to have to take Warfarin. But that's only an option if the cardiac loop recorder documents an Afib episode or something else happens that makes my doctor consider it. At least with the Plavix I could even have a minor outpatient surgery, I just had to wait and take my daily dose after I got home. So far no issues with bleeding or bruising, I seem to be tolerating it really well. I don't know if this will be a forever thing or if they will take me off it in time. I know I'm on it for the next two and a half years, until the loop recorder is removed. Then, I don't know.

Houston traffic is ridiculous. The speed limit is just a suggestion, nobody uses turn signals, and there are freeway entrance ramps that merge directly into the traffic flow. I call them "punch it and pray" lanes. I hate driving on Houston freeways, if I can take a surface road I will. My husband is completely fearless in Houston traffic, he used to drive around the city for his job, so he's been through the gauntlet. I let him drive me around at night or on the freeway. I pretty much stick close to home right now. I don't have my license yet, so I don't want a ticket. They never suspended my license, it just expired while I was going through all this crap and I'm dreading dealing with the DPS office, sometimes it can be a 3-5 hour wait. My doctor says I'm perfectly safe to drive, so I'm not endangering anybody, just risking a ticket right now.

Luckily, it's cool enough that walking outdoors is pleasant this time of year. I walk my daily mile in increments though. If the weather is bad, I do it by walking around the house a bit at a time throughout the day. But it'll be hot soon enough. I do have a membership at a budget gym that has a great pool for water walking. $10 a month for 24 hour access, including pool access. But when we move in August I have no idea what I will do for exercise. We're moving out of the city, possibly to a semi rural area, and I won't have easy access to a pool or large indoor space that's climate controlled. I'll probably find a cheap used treadmill, I see them listed on the local buy/sell pages all the time. Maybe there will be a pool close to where we move, there are some decent sized towns in the area. We're moving north of the city, but not way out into the country, just the exburbs I guess, so I can still get to heavily populated areas in a half hour or less.
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