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Question about seizures?

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Re: Question about seizures?

Postby Zor » Wed Jun 12, 2019 3:14 am

Una+ wrote:Well, Zor, I know some people who have seizures like that (seizures I have witnessed) but they still drive. That makes me really mad! And there are threads here in which posters report having wrecks before they knew they had a disorder.

Anyway, and this is for anyone reading this thread: wouldn't an Apple Watch or similar device be helpful for monitoring yourself?


IDK if those watches would help or not b/c they monitor physical things- and there's no real physiological cause they can determine for these. At best, I guess, it would serve as a GPS tracker for loved ones to find me, but since I don't drive or go anywhere at all on my own, it's kind of a moot point.
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Re: Question about seizures?

Postby exul » Thu Jun 13, 2019 10:42 pm

Thank you for all the replies.

I didn't know seizures in children were common at all, so that's new. Una+, yes, from what I know my blood pressure fluctuates, but it's mostly on the low-side. Dehydration would indeed explain some of them.

I told my mom about this and asked her for an appointment with the doctor when I'll be back in my hometown, so we can rule out some possibilities.
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Re: Question about seizures?

Postby Verdandi » Sat Jun 15, 2019 6:59 am

I had 3 seizures in a row when I was 17- full tonic-clonic seizing with loss of consciousness and apparently breathing. They were afraid I was going into status epilepticus. I was in a clinic resting a moment after having my blood drawn, laid my head down from feeling woozy, and woke up on the floor surrounded by worried doctors and nurses. So it was fully witnessed and taken seriously. Weirdly, I dreamed the whole time. Felt just like when I would fall asleep in class.
They assumed of course it was epilepsy and started me on an anticonvulsant right away. I was on them for a couple of years and never had another grand mal incident like that. I did have numerous periods before and after, of suddenly feeling "drunk" with mood changes, brain fog, and loss of coordination. Since I'd had the one grand mal, they chalked these up to temporal lobe seizures and stuck with epilepsy even though all the testing (even the blood taken immediately before the seizure) was perfectly normal.
Within the next year I began recovering memories, and within the next few years found out I was dissociative. When I got married I weaned off the anticonvulsant so it wouldn't harm my baby if we got pregnant. Went years without any definite "seizures". As I've gotten older, migraines have set in (there is a strong family history) and my neurologist says they can account for brain fog, sensory changes, mood changes, and a host of other wierd symptoms. There are times it is hard for me to tell when a migraine is setting in, or if my inner personalities are getting agitated and trying to communicate. But I no longer think what I had was epilepsy. I think it was a dissociative seizure brought on by overall severe stress my senior year and staying up all night per doctor's orders before that blood test. Maybe the migraine physiology made me more susceptible, maybe it was an adaptive way for my system to get help and be taken seriously. The drug I took for several years (Tegretol) is also used as a mood stabilizer, and it did seem to have a helpful (and permanent) effect on the type of mood swings I was having at the time.
I hope some of this rambling story is interesting or useful. Both my current counselor and neurologist are supportive and agree this is a plausible explanation. I hope you are able to find good doctors as well to help you with this journey.
Good luck!
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Re: Question about seizures?

Postby Skaya » Sat Jun 15, 2019 2:04 pm

Hello!

Adding in here as I might have useful insight - we have frequent (as in, average once a week, often more) dissociative/non-epileptic seizures. They present as epileptic seizures but are dissociative in origin. They increase in frequency when there's emotional peaks in either direction.

The general progression from my perspective as host is that when I'm feeling overwhelmed, I will get that 'fainting' feeling, and sometimes the earliest stages of muscle spasms. It took me a while of having them to recognise when one was coming on but if you can start documenting anything that may trigger or contribute to them that's vital. Also, worth asking around if anybody in the system knows more or is more conscious during them (for example, Angel is our alter who takes over during seizures. Once we worked that out, my partner and us as a system were able to find more tailored ways to help combat the physical symptoms - we have a lot more of the twitching/spasms than it sounds like you do, but worth noting anyway).

I should also mention that therapy has made the world of difference. They're still frequent now but far less severe and so less of a worry in terms of physical wellbeing. What you're describing sounds very similar to my own background, even being tested for epilepsy etc when I was younger! So don't lose heart, if it is dissociative, it can be helped and hopefully will start to improve.

Hope that helps. x
Em (25, f, host), Jen (19, f) Echo (4, f) Angel (9, f), Vivian (36, f), Jacob (13, m), Xavier (?, m), Oliver (?, m) SO Lex (f) may be mentioned.
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Re: Question about seizures?

Postby exul » Sun Jun 16, 2019 12:36 pm

Ty Skaya and Verdandi. Host read the replies.

Skaya wrote:Also, worth asking around if anybody in the system knows more or is more conscious during them (for example, Angel is our alter who takes over during seizures. Once we worked that out, my partner and us as a system were able to find more tailored ways to help combat the physical symptoms - we have a lot more of the twitching/spasms than it sounds like you do, but worth noting anyway).


I wanted to reply to this in particular. From what I know and from what I remember, when there's stuff like this that has to do with physical events, the ones that are there to check what do we have to do is either Jason or Nico, but I don't think they ever took over completely. Weird thing is I don't think anyone of us ever experienced those things. Like, if I remember correctly, it's just the host that happened to be in the body when those happened. Maybe it's a simple coincidence since they're in the body most of the time.
For the rest, yes, we hope we'll have a decent doctor to tell us what to check and I hope host will keep tracks of symptoms like these.

Hope you're well
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host (19, f, non-binary), Guardian (40ish, m), Nico (35, m), Nathan (25ish, m), Xavier (15, m).

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