Seizures during sleep

[Rob K]

Does anyone have any experience with seizures during sleep?

I'm still trying to figure out why I wake so many times during the night even though my AHI is around 1 most nights. I think the pressure settings are dialed in pretty good, but maybe not.

I've had several episodes over the last year where I woke on my back with real tense muscles throughout my entire body and feeling like I could barely move. I had been biting down real hard on my tongue so my tongue and jaws were in extreme pain. Laying there focused on breathing the tension and pain would go away after 20 minutes I'm guessing. I also wake often for no apparent reason which I've read can be caused by minor seizures.

I find that I move while I'm sleeping and will wake up on my back not knowing how I got there. A large part of the time I'm on my back when I wake up. When I've had those real bad episodes(guessing that they are seizures since I live alone) they have all been on my back. Recently I've been studying my breathing graphs in Oscar and I get 1/2hr to 1hr blocks of time where my breathing is real messed up. I'm not sure what's causing the breathing problems, but I suspect back sleeping or rem sleep. I'm leaning toward back sleeping since I started turning off my machine briefly to mark that I woke on my back. This is happening during those periods of troubled breathing so I'm thinking it's back sleeping. I'm also thinking that back sleeping is triggering seizures.

I have had two seizures when I was in my teens and twenties. They were full on laying shaking on the floor episodes. Both triggered by fever and the flu. Even though it's been a couple decades or more I still recollect how they felt.

I'm looking for some insight into this. I have read there are sleep position monitors and seizure monitors. I'll take a closer look at these, but most of all I need some guidance if anyone has experienced this stuff before.

[DreamDiver]

Does anyone have any experience with seizures during sleep?

I'm still trying to figure out why I wake so many times during the night even though my AHI is around 1 most nights. I think the pressure settings are dialed in pretty good, but maybe not.

I've had several episodes over the last year where I woke on my back with real tense muscles throughout my entire body and feeling like I could barely move. I had been biting down real hard on my tongue so my tongue and jaws were in extreme pain. Laying there focused on breathing the tension and pain would go away after 20 minutes I'm guessing. I also wake often for no apparent reason which I've read can be caused by minor seizures.

I find that I move while I'm sleeping and will wake up on my back not knowing how I got there. A large part of the time I'm on my back when I wake up. When I've had those real bad episodes(guessing that they are seizures since I live alone) they have all been on my back. Recently I've been studying my breathing graphs in Oscar and I get 1/2hr to 1hr blocks of time where my breathing is real messed up. I'm not sure what's causing the breathing problems, but I suspect back sleeping or rem sleep. I'm leaning toward back sleeping since I started turning off my machine briefly to mark that I woke on my back. This is happening during those periods of troubled breathing so I'm thinking it's back sleeping. I'm also thinking that back sleeping is triggering seizures.

I have had two seizures when I was in my teens and twenties. They were full on laying shaking on the floor episodes. Both triggered by fever and the flu. Even though it's been a couple decades or more I still recollect how they felt.

I'm looking for some insight into this. I have read there are sleep position monitors and seizure monitors. I'll take a closer look at these, but most of all I need some guidance if anyone has experienced this stuff before.

Does your current sleep apnea doc know about this? I'm going to assume they do because that's a big thing. Further, if the doc isn't a neurologist, I wonder if it might be appropriate to visist a neurologist with a specialization in sleep apnea to get more information from someone who has studied this -- maybe even go in for some testing on that front.

I'm going to assume the more recent episodes are not sleep paralysis episodes which are merely times when your mind is awake but your body is not. It's usually a doorway to conscious dreaming for some, but most just relax and go back to sleep or wait a few minutes and wake up.

There may be others on the forum who have been in a similar situation. If not, I hope you get a monitor or monitors that can help you and your doc keep an eye on things.

[Rob K]

I don't have a sleep doc now. I did have a several doctors in the past that were of little help. Have been through much testing and spent much money for over several years. It wasn't until I gave up on them and the medical industry and started doing research on my own that I seen improvement. The people here helped greatly with that. So now the first thing I do is the research and ask questions of people that may be dealing with the same things already. These days I'm only inclined to turn to professionals if it's an emergency. I really have little faith in the system. I'll turn to a doctor in the end, but I'll be going there well prepared and have a good idea of what's happening.

The episodes are definitely not sleep paralysis. Waking up with muscle tension and every nerve in my body tingling also biting down hard on my tongue to where there is great pain in my tongue, lips and jaws. It seems extreme but happens very infrequently. Once maybe every couple months. My first guess is seizures since I experienced them in the past. Those are obvious, but I also wake pretty often not knowing what caused the wake up. Today I was reading about how minor seizures can cause that. Doing some research, that's why I posted. Also read that hypoxia(low oxygen) can trigger seizures. That ties directly in with the apnea. Even though my AHI is low I'm starting to wonder if my pressure is inadequate at certain times like on my back or during rem. Need to do some testing and figure that out.

[Julie]

Have you 'researched' bruxism?

As someone who's worked for neurologists, I think trying to diagnose yourself for seizures is a bad idea - you really aren't going to do it properly thru Google and need real neurologists and specific equipment to even begin.

A relatively high number of young people (like yourself 'back then') do have the odd seizure once or so when growing up either with fever or following another event... but they do not necessarily go on to develop epilepsy and do not otherwise have seizures at other times in the future.

The trouble with self diagnosis (let alone for events that take place when you're asleep or close to it) is that apart from not having the education for it, you don't know what 'doesn't' count as meaningful - in other words you can match what sound like your perception of your half-awake symptoms to fifty things you'll find on the web, but you won't know which accounts are irrelevant for which medical reasons, or why... only which 'sound' like what you experience.

[Hypno]

Yes

[DreamDiver]

Have you 'researched' bruxism?

As someone who's worked for neurologists, I think trying to diagnose yourself for seizures is a bad idea - you really aren't going to do it properly thru Google and need real neurologists and specific equipment to even begin.

A relatively high number of young people (like yourself 'back then') do have the odd seizure once or so when growing up either with fever or following another event... but they do not necessarily go on to develop epilepsy and do not otherwise have seizures at other times in the future.

The trouble with self diagnosis (let alone for events that take place when you're asleep or close to it) is that apart from not having the education for it, you don't know what 'doesn't' count as meaningful - in other words you can match what sound like your perception of your half-awake symptoms to fifty things you'll find on the web, but you won't know which accounts are irrelevant for which medical reasons, or why... only which 'sound' like what you experience.

Rob,

Julie brings up all the essential concerns. A key element you'll need to have is a doctor you can trust who will work with you, treating you more like a colleague than a statistic. I know from personal experience the sense that you're just a number, and that you're just being processed for the money you can provide for their next Bahama vacation or a new deck treatment for their yacht, and that they're going to drop interest in you when your money runs out. It's absolutely frustrating. But not all doctors are like that. Finding that ideal doctor can be a challenge, but in the end, it's worth it. If you don't have a sleep doc right now, it's really important to find a sleepdoc with a specialty in neuro or a neuro doc with a specialty in sleep apnea. Better if you can find one who actually has sleep apnea.

We're here to give you some advice, but we're absolutely not doctors. Julie is right. This is one of those times when it really is important for you to find a doc. Equipment can help, but if you're not trained on how to use that equipment it can lead to confirmation bias and wrong conclusions.

I hope you'll start researching doctors today.

[rosie1231]

The trouble with sleep neurologists is that if they don't catch one of these episodes on PSG, then it didn't happen. The alleged incidents will be blamed on "your perception of your half-awake symptoms" as being faulty. The probability of obtaining EEG corroboration on events that only occur a few times per year is so low that I generally wouldn't bother either - unless, like others mention, you find a sleep neurologist who believes that a) their patients are capable of identifying basic body sensations, and b) the basic body sensation of extreme pain is worth fixing.

I don't have any suggestions but feel for ya, OP.

[Rob K]

I've had bad experiences or no results from quite a few of the doctors I've seen. Maybe my luck is bad. This has left me with little faith in the system and it will take a long time before it's ever regained, period. That's all I will say about it because now I'm repeating myself.

Very true that it will be hard to detect something that is infrequent. I can't spend every night in the sleep lab that's why I'm thinking I need to get my own monitors that I can wear every night.

I think I need some advise on finding a good doc. I seem to very often end up with mediocre of bad ones.

[Rob K]

I forgot to mention that I do have bruxism. Had it for a lot of years. The dentist tells me I have it since my teeth have wear. I would never know I have it if it wasn't for that. It seems quite minor. The recent episodes certainly don't seem like bruxism. Far to intense for that and involves my entire body. Very intense pain in my tongue, jaws, lips and cheeks. Every inch of my body is tense, tingling and in pain to some degree. The worse is in the face and jaws. I'm think that I'm biting real hard on my tongue when all the muscles are under tension. As soon as I wake I'm able to start relaxing but the pain is intense and takes probably 15-20 minutes to subside before I feel like I can move and get out of bed and regroup from the experience.

[Julie]

You need a neurologist. Get referred asap.

[klm49]

You need a neurologist. Get referred asap.

Absolutely!

[Hypno]

You need a neurologist. Get referred asap.

Go to a university of you can. Cleveland clinic, Mayo Clinic, etc Many neurologists are horrible people and extremely limited.

[Julie]

That's ridiculous! Don't generalize.

[Rob K]

You all suggest a number of things that I've already done in the past. My list of doctors, testing and diagnoses are pretty long. Seems like way to much to go on about here. I guess I could highlight a little of it.

When I first started feeling bad the second person I seen after my general was a neurologist. The reason being that I seemed to have nervous system problems causing a lot of pain everywhere. Those visits led no where except back to my general who eventually sent me to the sleep lab. It was figured out that the main problem was sleep deprivation from sleep apnea. By the way, never have an electromyography to test your nervous system, if you can avoid it. Worse experience I've ever had.

Have been misdiagnosed a number of times and put on drugs that were of no use and made me ill because the diagnoses were wrong. Things like fibromyalgia, anxiety, depression.

Have been to Mayo for a second opinion for several things and that ended up mostly at a dead end except it was found I had vitamin d deficiency. The supplements have helped a lot with pain. I actually had a second sleep study at Mayo because my first sleep doc was bad. The Mayo doc told me to turn down the pressure or go without the machine and sent me back to my first doc. Turns out I needed the exact opposite, needed higher pressure. Neither of those doctors or people in the labs figured that out. The folks on this forum helped figure that out.

The main problems I'm having right now are not getting quality sleep since I wake 6-10 times per night. I'm in a continual process of trying to figure that out which is why I started this thread. I still have quite a bit of nerve pain throughout my body. It goes away completely if I can ever get decent sleep. Pugsy got me started on keeping a journal, has been 3 months. Keeping notes about my sleep data, how I feel, things I eat, etc. The only thing that I have been able to discern from it is that I feel bad when I don't get good sleep and I feel great if I get good sleep. I feel bad if I sleep 8 hours or less and I feel great if I sleep 10-11 hours. I've already known this for years. Getting to the heart of the problem still eludes me. Everything seems to point toward poor quality sleep. Within the last year I started having these occasional episodes at night which sure seem like seizures. I wonder if minor ones are causing me to wake. Just trying to narrow down the possibilities.

Seven years into it now. This has been a tough nut to crack. I sure appreciate everyone's insight.

[chunkyfrog]

You need a neurologist. Get referred asap.

Go to a university of you can. Cleveland clinic, Mayo Clinic, etc Many neurologists are horrible people and extremely limited.

When my son had his stroke, he was referred to exactly such a defective, GREEDY non-provider.
I understand that is not the rule--but it appears to be a poorly enforced one.