Does anybody know this?

Inara

Inara

Senior Member (Voting Rights)
Sorry I had to choose this dumb title, but since I don't know what it is...I chose that one.

Does anybody experience this, too, or know what it is?
Sometimes, I have a sudden 'weakness seizure'. Up until now it only happened at night; once, I woke up from deep sleep with this 'weakness'. (I cannot sleep with it.) It starts with a feeling of being drunk: slurred speech, staggering, weird feeling in the stomach, slow thinking. This increases step by step until my entire body feels weak so that I cannot walk, or I can only move with collecting all my will (if at all). Speaking is very difficult. It takes about 45-60min until it is over.

I measured blood preasure and blood sugar during such a 'seizure' - all normal. Glucose intake doesn't help. Once, I tried an antihistamine (maybe not enough?) which didn't help, too.

Thankful for any input!
 
I don't know if this is the same thing but it sounds like something I experience if I have repeatedly overdone it without resting up and allowing myself to recover properly.

I may seem to recover after a few hours in a darkened room with absolutely no stimulus but I will continue to be very shaky and won't really be able to function either physically or cognitively. I might just manage a monosyllabic exchange but that's it.

If my experience is the same thing as yours (and it may not be) then it would be a sign I am not pacing properly. However, it also happened to me while I was taking medication containing pseudoephedrine. This is based on the adrenaline molecule and if you are sensitive acts like a stimulant - except I didn't feel better or more awake I was just pitched into a series of the episodes like you described until I realize what the problem was.

So, I would have a good long look at what I had done during the week before the episodes started (PEM can be delayed by up to 3 days for some), check any new ingredients in my diet and any new medication.
 
Obviously, it sounds like something you should have checked out by a doctor. I once rushed my father to the ER because he had suffered a transient speech impairment that I thought was a sure sign of stroke. Nothing showed up on X-ray, so it was ruled a transient ischemic attack (TIA).

Wondering if the same effect might be caused by migraine, I ran across this info on something considered rare called Migraine with Brainstem Aura.

https://www.migrainetrust.org/about-migraine/types-of-migraine/migraine-with-brainstem-aura/

Among other things, it mentions:
  • Slurring of speech (dysarthria)
  • Unsteadiness of gait as if drunk (ataxia)
 
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Thank you, @Invisible Woman and @Forbin! Both sounds realistic in fact. I had thought about an exhaustion symptom, too, but a migraine type would also be possible.

If it's exhaustion, why could it happen during sleep?

In fact, it's not new, it started ca. 1.5 years ago (as other nice stuff; I guess this was due to the misdiagnosis and therefore ignoring how I felt), but it's getting worse.

You are right, if new symptoms occurr that should be checked.

Edit: I also thought about not enough O2, e.g. in the brain.
 
But TIA sounds serious. I have these "seizures" regularly (I realize it seems to come and go periodically, i.e. I had some months peace, now it's back again and worse than before), and the day after I don't feel worse, just 'normal-bad'.

I want to try O2 next time I have a'seizure' (I have a professional machine here).

Oh thank you all, I will have it checked next year.
 
I recognise the symptoms, but not the timing, I have only had this happen a couple of times at night, that woke me up, that I remember.

More normally I get something that sounds similar when I push it, typically when I go out when I know I shouldn't, not every time, they come in clusters, sometimes virtually every time I go out, then nothing for a few months, of course this may be confused by the fact that sometimes I don't go out for months ;) sometimes it happens for no apparent reason apart from environmental stress (flickering lights, traffic etc.).

Pretty sure I have described this on here before but basically it's sudden weakness, so that even using a shopping cart I can barely stand, I end up leaning over it, largely unable to speak and unable to make myself understood when I can, slow,or everything else is too fast, confused, can't see, well I can see but unable to understand what I am seeing properly, with a very limited visual range, pretty severe abdo pain, lower back pain, mid back pain, arm burning (from the effort of trying to stay upright - ish).

Feels like I am dying, obviously, as this has been going on for years, I'm not, but it feels like........

It stopped being worrying, or even significantly frustrating, years ago, not because it stopped, but because I got used to it. That doesn't mean I'm not virtually helpless, physically and mental incompetent, more or less incapable of moving at all when it's at its worst, with virtually the only thing my brain is capable of dealing with is attempting to maintain bowel control.

The number of buses I've missed coz I couldn't move, any attempt at moving would have resulted in loss of control of something, just got to wait it out, wait for it to pass.

You can get used to virtually anything given enough time.

GP just said, keep taking the tablets and see if it passes, it didn't.
 
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Inara said:
But TIA sounds serious. I have these "seizures" regularly (I realize it seems to come and go periodically, i.e. I had some months peace, now it's back again and worse than before), and the day after I don't feel worse, just 'normal-bad'.

I want to try O2 next time I have a'seizure' (I have a professional machine here).

Oh thank you all, I will have it checked next year.
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Let me know if you get any info on this when you have it checked?
 
@Subtropical Island
I will.

Thank you, @Wonko, for describing your experience. It is pretty similar to mine, only the time differs. So it might be exhaustion in the end. Still I think I will have it checked.
You are right - one can get used to anything (as we all know, I guess). Still, at times it can be scary, to feel so utterly weak so that moving is near impossible.
 
What if you discussed your symptoms with a sleep expert or even better look for a sleep laboratory?Maybe having extensive testing while asleep could provide clues into your CFS/ME.Maybe having a sleep disorder could be an aggravating factor in your CFS/ME.
 
Thank you, @healthforall!

You raise interesting points. I will have to think about it.

Actually, I would say, my sleep feels close to normal since I take immunoglobulins plus melatonin. This changes during PEM/crash. Of course, I can't say anything about quality. I don't feel grand in the morning. :)

I got this "seizure" once during sleep, in all other cases it happened before sleep.

I will include this in my discussion with my GP.

I also thought about getting an oxymeter/blood pressure device with a record function for the night. In the past, I already considered installing a night camera since I sometimes tend to do things I can't remember (maybe sleepwalk?), and I had body cramping/"muscle seizures" (very seldom).

Honestly, I am a little unwilling to go to a sleep lab since I know I won't sleep (exhaustive) - and, more importantly, due to this I'd say the results wouldn't be representative.
 
By the way, I tried O2 during the last 'seizure', and I'd say it didn't do anything.
 
Yes, I htink is from the autonomic system, when it is pushed beyond your energy permits (see videos of Jessica and Jen on Unrest and the other movie which I always forget the name). When I went for autonomic testing by the third day I experienced it (in the valsava test). If you get to that point you have pushed WAY beyond what you can take and you are ignoring the first signs of a crash. Also, any medications that have autonomic system rare side effects, can do it for me too (Like codeine). My humble experience.
 
Thank you, @Seven!

I haven't watched Unrest so far. It gives me some 'comfort' that others, like @Wonko or @Invisible Woman (and Jessica and Jen in Unrest) experience the same.

The problem is - I don't have the feeling that exhaustion symptoms come up before; well, not those I'm used to and that I can understand. Plus, I got those 'seizures' on 'quiet' days, too. That's why I wasn't sure it's exhaustion.

I already have overthought my daily behavior and will change some things.
 
I'm glad you are going mention this to your doctor @Inara .

You mentioned that this happens on "quiet" days too. You may already know this, but PEM is a complex thing and it can also change over time for some of us. It can occur immediately or can be delayed by up to 3 days.

So if you could be active, but apparently without triggering PEM the first day, and then, even if you don't do much on the second day and don't have PEM, you may find the delayed PEM from the first day start on the 3rd day, even though you are having a quiet day on day 3. If that makes sense.

If course this may not be relevant in your case, but if you think it is a possibility, then it might be worth keeping an activity diary, just until you can see if there is any pattern.

Where you are in the monthly cycle can make a big difference for some of us as well. I have generally found that PEM is more easily triggered and my overall condition is worse starting a few days before and during a period.

I hope you find some answers.
 
Inara said:
Sorry I had to choose this dumb title, but since I don't know what it is...I chose that one.

Does anybody experience this, too, or know what it is?
Sometimes, I have a sudden 'weakness seizure'. Up until now it only happened at night; once, I woke up from deep sleep with this 'weakness'. (I cannot sleep with it.) It starts with a feeling of being drunk: slurred speech, staggering, weird feeling in the stomach, slow thinking. This increases step by step until my entire body feels weak so that I cannot walk, or I can only move with collecting all my will (if at all). Speaking is very difficult. It takes about 45-60min until it is over.

I measured blood preasure and blood sugar during such a 'seizure' - all normal. Glucose intake doesn't help. Once, I tried an antihistamine (maybe not enough?) which didn't help, too.

Thankful for any input!
Click to expand...
I used to get something vaguely similar, i called them exhaustion spells, they came from burning myself to a crisp. I don't get them as frequently anymore because i burn out more easily now and i don't push that hard since i am getting worse much quicker (and i know what condition i have now).
 
It feels more like dysregulation/seizure than exhaustion is the primary problem for me when it happens i.e. I'm weak, exhausted, sick, brain not processing properly etc. because I'm having some form of seizure. I know that some events, noise, traffic, lights, can contribute to bringing this on, that they can "degrade" my ability to function quite rapidly, which can become the symptoms I described above.

Obviously there are elements of both, but I've had seizures, I've also experienced neurological exhaustion, this feels more seizure like, the physical aspects IMO are "just" an aspect of the dysregulation/neurological "confusion" being caused by the seizure. When it passes, which is generally under an hour, things return to near "normal", this wouldn't happen if it was exhaustion, although obviously there are after effects, including PEM, because feeling like that, forcing things to work (or even just hold things together) when feeling like that, has a price.

edit - of course, it is perfectly possible that the seizure is being enabled by neurological exhaustion, that if I hadn't been "degraded" by having to process certain types of events, deal with having people around me at the same time as trying to navigate/get things done, then the seizure wouldn't have happened ;)
 
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Wonko said:
It feels more like dysregulation/seizure than exhaustion is the primary problem for me when it happens i.e. I'm weak, exhausted, sick, brain not processing properly etc. because I'm having some form of seizure. I know that some events, noise, traffic, lights, can contribute to bringing this on, that they can "degrade" my ability to function quite rapidly, which can become the symptoms I described above.

Obviously there are elements of both, but I've had seizures, I've also experienced neurological exhaustion, this feels more seizure like, the physical aspects IMO are "just" an aspect of the dysregulation/neurological "confusion" being caused by the seizure. When it passes, which is generally under an hour, things return to near "normal", this wouldn't happen if it was exhaustion, although obviously there are after effects, including PEM, because feeling like that, forcing things to work (or even just hold things together) when feeling like that, has a price.
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I also wondered if it was a seizure because it passes in 10-60 minutes typically, though for me it is caused by blowing myself out hard and continuing to push or in bad PEM. In my disability application i described it much more thoroughly though i'm not wanting to copy and paste it here since this is a public thread.
Very interesting that its not only me who has this.
 
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