Does anybody know this?

[duncan]

I have a tin ear these days - upon rereading what I wrote, it did come across negative. Sorry. Tell the neurologist you have concerns about PP. People with PP often have treatment options that really work, which for most of us would be a good change of pace.

Oh, that sounds like a downer, too. It's this damned frigid Arctic flow! Just need for Spring to come. Spring is only how many days away? Damn...

 

[Inara]

No trouble, @duncan, I didn't read anything negative in your posts, just helpful hints.

Today we had stormy rain. That's a downer. I like snow, and then the spring, yes

 

[Inara]

So, I was able to talk about this with my GP. He doesn't know either what it is (might be an eplipetic seizure, but who knows) and suggests to have it checked by a neurologist. So that will be a new "project".

Ahh, I wish I knew it NOW.

 

[jeckylberry]

Yes. I get them regularly. They are the central issue of my illness. I have like a fogged out dizzy spell and lose coordination of everything, everything goes weak like a partial seizure. I have slurred speech and inability to form words and I fall down if I don’t get to a bed post haste. It’s usually triggered by some small exertion. I take Tegretol for the bigger symptoms like laryngospasm and anti inflammatories and that stops me having them more often and softens severity but sometimes it builds up or I exert myself too much (like walk around the house for too long). They can come on at any time though, not always after exertion. It has affected my walking and so I have a broad based gait when I’m not falling all over the place, a slight slur and weakness on the left side. I can stay upright for long. This is what is medically deemed a “funny turn”.

Those familiar with my story know just how rubbish neurologists have been and how many I’ve endured. They always look at my legs which are fine and pronounce it as functional (what I call the “f” word) and I get nowhere because it’s all that bullshit CBT/GET which made me worse in the first place.

 

[Inara]

Thank you, @jeckylberry, for describing your experience! First, I am relieved others know this, too. But then, what's disappointing, you don't know what it is, right? (Except @Wonko?)

I don't have too much hopes in neurologists or neurological clinics; or doctors in general. but I'll try.

 

[Inara]

Hi all, I have found the reason for one kind of these "seizures": I reacted - either allergic or something else - to a substance in a medication. I stopped taking it orally, and I didn't have these kind of "seizures" again.

Remains the other sort of "seizure" which I hope can be discussed next week with a neurologist.

 

[Mithriel]

I get exactly the symptoms you describe, Inara. They are a central part of my experience of ME and have happened regularly since the beginning when I was 14. I never missed any schooling or experienced fatigue but these episodes would come. I do not think they are TIAs because I have had so many it would have caused more permanent damage, though in my early forties I realised I had developed a droop on the left side of my mouth and had to give up playing the flute. The droop becomes more pronounced when I am tired.

I always feel my body runs out of something it needs, like using up visual purple in bright sunshine so you can't see when you go inside. The thing about PP and channelopathies is interesting as a researcher from Hawaii did a lot of work and found channelopathies in ME people. When he died the work just seemed to vanish as has happened to so many interesting research in ME.

 

[WillowJ]

@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)?


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!

There’s some talk of finding sleep waves during wakefulness in our brains (and waking waves during sleep), but I don’t know whether this has been replicated in large studies. Likely not.

Might be a guess as to why a doctor doing EEG would ask that in particular, though.

 

[Inara]

@Mithriel, thank you for sharing your experience!
Who was the researcher from Hawaii you talk about?

@WillowJ, interesting! Thank you.

 

[Inara]

I am sorry to say that my "seizures" weren't quite a topic at the neurologist's so there is still no possible answer to that.

All in all, it was not the worst experience, but very exhausting and painful, and in the end no results. They didn't take a muscle biopsy. Although I am not that keen on it, it probably could have shown something; or maybe not...I'm not gonna know.