Does anybody know this?

I don't get PEM.When I was diagnosed with CFS in the early 90s it wasn't among the criteria.I don't have any references/comparisons with PEM.I have heard that there are sleep disorders that involve moving muscles at a phase when muscles are supposed to be relaxed(paralysed?)Your issue seems to be the opposite you seem to be getting muscle paralysis while you are awake/waking up like your phases of sleep are not synchonised.It seems an interesting idea to use a camera and record what happens when you sleep.Maybe you'll find further evidence of a sleep disorder.You don't have anything to lose by looking into it.I don't know if the symptoms involving the stomach are consistent with a sleep disorder.
 
Inara said:
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.
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Perhaps I should have been clearer. What you and describe is what I call a crash.
But, although I fit the criteria and I know that this thing is real, I don't know that what is happening doesn't have a simpler explanation, or parts of it.
So I really really mean it when I said that I'd like to hear what your doctor finds about it. If there's anything else it could be, like mini-strokes etc etc, then I quite interestedly (as opposed to disinterestedly) want to know.

I also didn't want to tell you it's normal because honestly I don't think any of this is normal.

But it does help an awful lot to hear @Wonko talk about it. For me, he is always right. (Though I doubt he'd actually like a crowd of sycophants virtually following him around)
 
Dear @Subtropical Island, thanks for clarifying!

I will definitely talk with my doctor about it next time - I already mentioned it briefly, and he seemed to be surprised - and I will report what the outcome was. I wish very much it's just harmless.

Subtropical Island said:
But it does help an awful lot to hear @Wonko talk about it.
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Definitely!

Each one's post was very interesting and helpful, so thanks! (Tomorrow I will reply to the rest, it's sleeping time for me. :) )
 
I am no doctor, but these descriptions seem similar of those I've heard from patients with various forms of Periodic Paralysis (these typically involve channelopathies,e.g. potassium). Episodes can occur at odd times, for instance, upon waking. It may be prudent to see a competent physician to rule this out.

ETA: I would hasten to add that PP is a fairly unusual, even rare, diagnosis, so odds are in one's favor that it is not this.
 
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Invisible Woman said:
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.
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This is an aspect I didn't think about although I know of it.

I could imagine it's some sort of "nerve/brain exhaustion", a little bit like @Wonko explains.

But, @Wonko, if I understand you correctly, you have real seizures/strokes, which are on their own, parallel to PEM symptoms?
 
Alvin said:
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.
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Exhaustion and a seizure/stroke/migraine attack (like mentioned above) don't exclude each other. I.e. it could be a seizure caused by exhaustion.

Alvin said:
Very interesting that its not only me who has this.
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Yes! :)
 
Wonko said:
I don't understand the question :(
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I am sorry, @Wonko, my brain...

What you describe sounds like something on it's own - you say it's a seizure. Do you mean a real "stroke-like" seizure, e.g. something like transient ischemic attack ? Or maybe I don't understand you completely. Do you have a "theory" to why it happens and what the mechanism behind it may be?
 
I am not sure if it's relevant to your question, because I am still not sure what your question is (bad brain day), but I have had seizures before, of several types, from absence to gran mal (complete with the messy bits), for several years they thought I may be epileptic. So I have some experience with what a seizure feels like from the inside, it's characteristics, how it affects me. I also appear to be unusual in that I observe things like this, study them as much as is possible, while they are occuring, when I've asked others, epileptics and others, about such things, observations made during a fit, their brain reboot sequence, they have no idea what I am talking about - so I assume few others are able to maintain a thread during such events, or that they have been unable to store the memories

I have also had several TIA's in the past (I used to smoke, a lot, my blood used to look like tar, black runny tar, and I had a tendency to develop DVTs quite often), and, I think, one stroke (undocumented), I still on occasion suffer from some after effects of this, if it wasn't for the simple longevity of the symptoms I would have assumed it was a TIA also but a TIA doesn't leave problems that persist for days let alone years.

The events described by me earlier in the thread feel like a seizure, this impression is biased by the types of things that "degrade" my functioning prior to them occurring, not in every case, but given the end result is the same it seems likely that in all cases it's a seizure type event, although a lot of the effects are physical it's essentially a closed loop, it's my brain, the one that's having a seizure, that's interpreting the way my body feels at the time.

No idea if any of that makes sense, answers your question or simply confuses the issue :(

ETA - Theory - I think, and am almost definitely wrong, and will probably change my mind, such as it is, in 10 minutes, that any type of load, environmental shocks (noise, light, flickering, movement etc.) is sensitising my brain, making it less efficient at processing, there comes a point where virtually any stimulus will set off a cascade and I will experience one of these "seizures", sort of like a cross between an epileptic seizure and a panic attack (even though I am not anxious, paniced or these days even particularly frustrated even during a "seizure", my dominant emotional state at those times would probably be best described by "determined" or "bloody minded" - it's more the rising level (or dropping level) of switching threshold in my brain, becoming inappropriately sensitive, as I would imagine happens in a panic attack).

Did that make any sense?

Bad brain day, too complex an idea to describe for now, sorry :(
 
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healthforall said:
It seems an interesting idea to use a camera and record what happens when you sleep.Maybe you'll find further evidence of a sleep disorder.You don't have anything to lose by looking into it.I don't know if the symptoms involving the stomach are consistent with a sleep disorder.
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Yes, maybe there is a way to look at the sleep without a sleep lab.

I have gut problems. Over the holidays I didn't eat that healthy, plus exhaustion which worsens the gut problems. To wake during sleep due to pain is not entirely new for me, so that wasn't a big surprise.
 
Subtropical Island said:
Perhaps I should have been clearer. What you and describe is what I call a crash.
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Ah, I understand! Oh. :(

Subtropical Island said:
So I really really mean it when I said that I'd like to hear what your doctor finds about it. If there's anything else it could be, like mini-strokes etc etc, then I quite interestedly (as opposed to disinterestedly) want to know.
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Yes, I want to know, too. And although my GP is near perfect I don't expect too much.

But it does help an awful lot to hear @Wonko talk about it. For me, he is always right.
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Absolutely!!
 
@Wonko: Ah, now I get it! Language problems :) you mean epilepsy seizures, yes?
It's really quite interesting to read about your experience with this.

So, sorry if that takes longer today, what I explained reminded you of your "early stage" seizures (epilepsy seizure, TIA, stroke)?

Alvin said:
I've never been hooked up to an EEG during an episode so no idea if its an actual seizure
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I had an EEG due to epilepsy suspicion (no finding - BUT not sure, because the neurologist asked if I was very tired, so I guess there was something unusual and he explained it with tiredness; which could be correct, I don't know), but never during an "attack". Would be quite interesting!

@Wonko, yes, I understood you better, thank you!
 
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@ Wonko
You do make a lot of sense, though it sounds like your seizures are a comorbid condition (as well as the TIAs)

Inara said:
I had an EEG due to epilepsy suspicion (no finding - BUT not sure, because the neurologist asked if I was very tired, so I guess there was something unusual and he explained it with tiredness; which could be correct, I don't know), but never during an "attack". Would be quite interesting!
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I do wish i could be connected during an episode but i'd rather never have one again (if that were an option)
 
Inara said:
@Wonko: Ah, now I get it! Language problems :) you mean epilepsy seizures, yes?
It's really quite interesting to read about your experience with this.

So, sorry if that takes longer today, what I explained reminded you of your "early stage" seizures (epilepsy seizure, TIA, stroke)?
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No need to apologise, a "seizure" in my mind is essentially a cascade failure in the brains dampening, there can be many causes of this, from both sides. Neurological fatigue could cause it, by there no longer being enough calming neurotransmitters (probably using that wrong) to stop a cascade, other things (sorry, getting quite difficult to keep track of my own gibberish now) can also cause it by decreasing the difference needed to switch.

I'm not sure there is much difference in erm........mechanism (beyond what I've already described, I hope), only location, scope and duration.

ETA - I still get the type of seizures you described in your opening post, quite frequently, it may be just that my reference points are back in the dark ages when I used to endure many more different types of seizure, so that is how I describe things. It was just that, unlike in your case, it is very rare for them to occur in bed. I also appear to still have a fair number of absence seizures although these are much more difficult to keep track of, due to, unlike every other occasion where I switch off, there is no sense of elapsed/missing time unless this is provided by environmental clues.

ETA2 - definitely not epilepsy seizures, I have been tested, while a seizure was induced, the neurologist agreed I was having a seizure (nice of him), but said it definitely wasn't epilepsy - something about the waveforms from my understanding (epilepsy has characteristic ones, which mine weren't), which is limited as this was a long time ago and I haven't paid any attention to epilepsy since
 
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duncan said:
I am no doctor, but these descriptions seem similar of those I've heard from patients with various forms of Periodic Paralysis (these typically involve channelopathies,e.g. potassium). Episodes can occur at odd times, for instance, upon waking. It may be prudent to see a competent physician to rule this out.

ETA: I would hasten to add that PP is a fairly unusual, even rare, diagnosis, so odds are in one's favor that it is not this.
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Hi @duncan, I also thought briefly about periodic paralysis. But I had the feeling after reading the PP thread it doesn't fit. I am waiting for genetic test results, so maybe that may bring clarity in this respect.

The other thing is: how to find a specialist?
 
It's a challenge to find a neurologist qualified in this area, for sure. It's not unlike finding an expert in ME/CFS. If there are 1000 neurologists, maybe only one or two would have a vague idea of PP. You read a PP patients' forum and it reads like an ME/CFS forum - often frightening and bleak and defiant with moments of hope and levity.
 
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