CPAP/Stroke-like symptoms: Help!?

[PeterZ]

If you help me figure this one out, you'll be my hero! The doctors are stumped. Has anyone else had something like this happen before?

I've had a new ResMed CPAP for about 6 months, with a full face mask, and it has changed my life. However, on Tuesday around 7:30 in the morning. I woke with stroke-like symptoms: on the right side of my face, my eye wouldn't open and my lips wouldn't move. Fearing a stroke, I rushed to the hospital. They did a zillion tests. CAT scan, MRI, Echo, neurology exams, blood tests, etc. Nothing could explain it, but the symptoms went away.

The next morning, still in the hospital, I woke up and the symptoms were back. Again, the docs couldn't figure it out. We've considered everything from spider bites to miniature strokes to Bell's Palsey to allergies. One thing it might be is the CPAP, though it's hard to figure out what the mechanism might be (a pinched nerve?). I tried changing the CPAP mask last night, but today again I woke up with the same symptoms. Tonight I'm going to try to "sleep" without it, but I usually get zero sleep if I don't use it, which is why I use it religiously.

Any thoughts?

Additional notes:
I'm 36 and weigh 170 pounds. I don't seem to have typical sleep apnea. Instead, at night I often experience what feel like jolts and twitches. The twitches in my throat often wake me up. Nobody can figure what causes the jolts either -- it has been a two year parade of doctors -- but the CPAP, much like a white noise generator, seems to make the twitches in my throat less noticeable, and I can sleep pretty normally with it. Nothing else, except a strong sedative, seems to help.

Thanks!

[Heart Jumping]

I can't offer any help but do have a couple of questions.

1. Do you have any lingering effects after these incidents? Drooping eyelid etc.? Or do they just completely go away?
2. How long does it take for the symptoms to go away?
3. Did you experience any confusion or difficulty speaking?

I very seriously doubt that CPAP is the mechanism and am concerned you are both endangering yourself as well as wasting valuable time by going down the route of not sleeping with it. You've been using your CPAP for 6 months, why would there even be a suspicion of that being the cause?

The next morning, still in the hospital, I woke up and the symptoms were back.

I'm guessing you didn't have your CPAP with you in the hospital? If I'm correct, wouldn't that also prove it's not the cause?

If it has happened a third time now you should go straight back to the hospital, or to a different hospital until they get to the bottom of it.

I don't seem to have typical sleep apnea. Instead, at night I often experience what feel like jolts and twitches. The twitches in my throat often wake me up. Nobody can figure what causes the jolts either -- it has been a two year parade of doctors -- but the CPAP, much like a white noise generator, seems to make the twitches in my throat less noticeable, and I can sleep pretty normally with it. Nothing else, except a strong sedative, seems to help.

I don't understand this. Were you diagnosed with apnea? If not, why did they prescribe a CPAP for you? I'm just trying to understand so we can try to help, as I don't see a doctor saying "we don't know what's causing the throat twitches, so let's give a CPAP machine a try". Surely they had to diagnose some form of apnea?

[IDontSnoreISwear]

I once knew a guy who had stroke-like symptoms with his migraines. Do you have a history of migraines?

[Heart Jumping]

I once knew a guy who had stroke-like symptoms with his migraines. Do you have a history of migraines?

Yes, and there is also something named "silent migraines", where people don't even know they have a migraine but can experience some stroke like symptoms.

http://www.doctoroz.com/blog/leigh-vino ... e-symptoms

But based on his description it's now happened 3 times - I think he should get to a hospital immediately.

[BlackSpinner]

I once knew a guy who had stroke-like symptoms with his migraines. Do you have a history of migraines?

My sister had that. It didn't take them that long to figure it out but there is a history of migraines in the family.

[Michelle-OH]

Did they rule out the mini stroke(TIA) then, cause that's what it sounds like.

[Lucyhere]

Hi Peter... I was glad to read that you already had a "zillion" tests that didn't show anything. However, if it were me I'd take copies of the test results to a different doctor(s), and I wouldn't wait for your symptoms to return before you do that. Doctors look for different things, generally along the lines of their expertise.

It doesn't seem possible that this has anything to do with your CPAP use. You are only breathing air. I would continue searching for answers and I wish you the best.

PS Someone I know who lives on the ground floor of her apartment building hasn't been feeling well for well over a year. She went to different doctors who didn't find anything. Turns out there were broken pipes under ground (directly under her apartment) and she has been breathing in the fumes. She is having further testing but now her doctors think that may have been the problem. Conclusion... it could possibly be the air you are breathing - not the CPAP itself.

[Heart Jumping]

It doesn't seem possible that this has anything to do with your CPAP use. You are only breathing air. I would continue searching for answers and I wish you the best.

THIS X 100. Hopefully it's something that's not serious, but I would not wait just because they didn't find anything. Go to the hospital, or get an immediate appointment with a neurologist and explain the symptoms and ask to be seen immediately.

[kurth83]

Even if it is not CPAP you have to do the diligence to rule it out.

If it is silent migraines, serotonin enhancers may help, if it is the kind of migraine caused by low serotonin levels (I have this kind), like 2000mg L-tryptophan before bed, that did wonders for mine. Taking one Aspirin at bedtime as a preventative also helps me.

I have had CPAP mask straps and chin-straps slightly restrict blood flow to the brain if adjusted too tight, but it never did anything worse than give me a headache (it would trigger a migraine for me), so I wouldn't rule out CPAP until you are sure.

[PeterZ]

THANK YOU THANK YOU THANK THANK YOU for all the responses and advice. This is super helpful. You all are awesome! I've never crowdsourced a health issue before, and this was a complete shot in the dark. You've given me some great ideas. Here is some more information and answers to your questions. Please keep it coming with your ideas because I really need to solve things. Overall, this ordeal has been stressful because I worry it'll turn out to be something chronic and really bad and that I'll have to shut down my business or cut back on things. This is a nice sigh of relief. Maybe it'll just go away on its own? Fingers crossed. Anyway, I also appreciate you all giving me a place to commiserate.

UPDATE
Now that I've read the comments here, I'm not sure this was the smartest thing to do, but I guess that's water under the bridge. I tried "sleeping" last night without the CPAP and woke this morning and the symptoms were gone. No half paralyzed/swollen face in the morning for the first time in three days! I was relieved to not have to go to the hospital again (they've told me to go back any time I have stroke-like symptoms, but I didn't do this yesterday because I needed a break from the hospital and I didn't have all the stroke-like symptoms: my brain and the rest of my body all seemed fine).

I also didn't really sleep last night, so it doesn't necessarily mean the problem was the CPAP -- the symptoms always seem to go away when I don't sleep. But it clearly seems to be something that happens when I'm in bed, perhaps when I'm asleep.

Anyway, thank God it didn't happen a fourth time. Tonight my sister (a pediatrician) suggested I try once more not sleeping with it, but after that I really have to go back because I need to get some rest.

A few additional details
I've started taking a baby aspirin in case it's some sort of mini stroke. I currently take a small does of the anti-depressant Welbutrin, but I have been on it for years.

As strange as this sounds, the doctors think it could be some sort of venomous bug that bites me at night, but I haven't been able to find any in the room. Nonetheless, that's the best theory out there so far. The CPAP wouldn't normally be a consideration just because I've had it for a while without incident and use it religiously, but it is very close to the problem area -- the right side of my face -- and the issue seems to start going away soon after I wake up.

QUESTIONS FROM "HEART JUMPING"

1. Do you have any lingering effects after these incidents? Drooping eyelid etc.? Or do they just completely go away? 2. How long does it take for the symptoms to go away?

I have lingering effects that go away quickly at first and then slower, until they're completely gone in the evening around 7. But it's obvious to anyone looking at me in the morning they my eye lid is drooping and I can only talk out of one side of my mouth.

3. Did you experience any confusion or difficulty speaking?

I did the first time it happened, but I was also really freaked out because I looked so weird in the mirror. But on day 2 and day 3, I was not confused and could speak fine the entire time.

I'm guessing you didn't have your CPAP with you in the hospital? If I'm correct, wouldn't that also prove it's not the cause?

I did have the CPAP at the hospital. I had my sister bring it to me so I could sleep.

Were you diagnosed with apnea? If not, why did they prescribe a CPAP for you? I'm just trying to understand so we can try to help, as I don't see a doctor saying "we don't know what's causing the throat twitches, so let's give a CPAP machine a try". Surely they had to diagnose some form of apnea?

This is more or less what happened. When they did the sleep test, I woke up about 50 times. But it wasn't related to my blood oxygen levels and the brain-thing didn't show the signs of any typical sleep disorder. However, the sensation to me has been that I'm woken up by a twitch/jolting feeling, often in the back of my throat. Sometimes it seems to briefly cuts off the air supply and wake me up when, perhaps, most other people would just snore. Or it's something else and this is just the sensation I have. In any case, the tests didn't show this to be the case but aren't sensitive enough to rule it out.

We tried a lot of different things, from a mouth piece to Ambien, but nothing seemed to work. The doc had a spare CPAP and said "why don't you try this?" I tried it and I have been sleeping well ever since, but I can't even take a nap without it.

If it has happened a third time now you should go straight back to the hospital, or to a different hospital until they get to the bottom of it.

Agreed. I spent two days in the hospital because of this issue. They thought it might be a stroke or a mini-stroke called a TIA but have been able to mostly rule those out, but not definitively. They taught me how to do some stroke tests said come back if it seems as though I'm having a stroke. But healthy, 36-year-olds who are of normal/low weight rarely get strokes. It seems to be something else.

QUESTIONS FROM DontSnoreISwear

I once knew a guy who had stroke-like symptoms with his migraines. Do you have a history of migraines?

Smart question to ask. The answer is ... No. Though I've heard it's possible to get them without noticing, so that's a possibility.

QUESTIONS FROM Michelle-OH

Did they rule out the mini stroke(TIA) then, cause that's what it sounds like.

This was something the docs have suspected, too, and the worst case scenario. The CAT scan and MRIs would have likely shown this, but it's hard to rule out because, apparently, TIAs can also be hard to detect. That could be what is happening, and I've started taking aspirin to reduce the risk, if that's what is happening.

COMMENT FROM Lucyhere

could possibly be the air you are breathing - not the CPAP itself.

That's possible. Or maybe like an allergic reaction? The only reason I think probably not the air is that it seems symptoms wouldn't reappear when I slept overnight because I can't imagine they'd have tainted air there. But I hadn't thought of an allergy, and that could be something in the air that's everywhere. Would an allergy just affect one side of the face?

[Heart Jumping]

Peter,

I can't tell you how much I wish you the best, I've had some issues I've been trying to get to the bottom of and also had a "TIA like" event a year ago, not as bad as yours, as well as some face numbness and nerve issues. It's stressful and scary and frustrating. Sometimes such things reflect a serious issue, sometimes they are pretty benign. My biggest concern reading your story is that they determine which it is, so that you don't have something serious that requires immediate action left unaddressed.

I'm going to guess the fact that you've had 3 episodes close together probably tells an expert something, even if it's just to help rule some things out.

While it's absolutely true that strokes (and TIA "mini-strokes") are much more common in the elderly, they do in fact happen to young people, and I've read that sometimes they've been discounted because of that, and not properly treated. I'm not trying to scare you, I'm just saying that's one of several reasons I think you should go straight there if it happens again. I'm glad you are taking aspirin and would continue that religiously until you get to the bottom of this.

Did they do any EMG (nerve test) or nerve conduction tests? If you see a neurologist I'd ask him if those should be done as well. I'm not sure what to make of your description of your throat twitching, but twitching is usually nerve based, so I'd mention your apnea and description of it to the neurologist as well, so you don't leave anything out.

The fact that the MRI and all the other tests can be good is great, so hopefully in the end this will just have been some weird benign event!

Please update us when you can.

[BlackSpinner]

Now that that is answered, what kind of cpap do you have and can you read the data from it. It would be interesting to the crowd to see what exactly what is happening on those nights.