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Question about seizures?

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Question about seizures?

Postby exul » Mon Jun 10, 2019 10:55 am

Hello, hope everyone is doing good.

I sometimes remember this thing that happened when I was around 5 (or smaller, I'm really bad at pointing things in time). It never happened again, but it was weird. I remember I woke up one night, I think from a nightmare. But I remember it wasn't too bad, otherwise I would remember what it was about. Out of the blue, I found myself shaking. Like, violently shaking, my whole body (teeth, arms, torso, legs, everything). It wasn't the cold and with all probability it wasn't the fear, since I remember being way more scared of the fact that I was shaking so much than of everything else. I remember I was conscious at first, but then it was like my consciousness started to fade, and I began to see things like I was slipping into dreaming state again. All while shaking. I saw a skeleton with my mind's eye, and for some reason it scared me (I never was and still am not afraid of skeletons in particular). After seeing that, I saw an angel that I somehow knew was supposed to "take away the fear". After I saw the angel, I probably fell asleep again, since I don't remember anything else.

Like I said, it never happened again as long as I remember. I never got tested for epilepsy, because I never had a reason to, but I don't know if that could actually be considered a seizure since I was conscious almost all the time?
I know that people with DID sometimes experience seizures, but that they are not quite epilepsy seizures. Does anybody have thoughts on this?

Edit: I'm researching stuff now, and apparently some other episodes including this look like actual epileptic seizures, when I always considered them simple "fainting" (even though I almost never lose consciousness of the thing, I just lose sight, hearing and sometimes speech and feel drowsy and confused). Fact is, I never got tested for epilepsy, it's true, but I've done more than one experiment involving EEG for many hours, and it never came up with anything abnormal.
I think it's time to talk about this with my GP.
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Re: Question about seizures?

Postby birdsong87 » Mon Jun 10, 2019 12:48 pm

the 'fainting' does sound like dissociation.
there are more reasons for seizures than dissociation or epilepsy eg getting little oxygen.
my best bet would be some kind of sleep apnea that also caused hallucinations.
if it happens again it would be very wise to see a doctor. none of the reasons for seizures is a happy one.
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Re: Question about seizures?

Postby exul » Mon Jun 10, 2019 12:58 pm

birdsong87 wrote:the 'fainting' does sound like dissociation.
there are more reasons for seizures than dissociation or epilepsy eg getting little oxygen.
my best bet would be some kind of sleep apnea that also caused hallucinations.
if it happens again it would be very wise to see a doctor. none of the reasons for seizures is a happy one.


I didn't thought dissociation was connected because I had what they call an "aura" before it happened, and it almost always happened when I fell. It always seemed to have a sort of physical onset. Like for example, I was 7 or so and doing PA, and I fell down while I was running. No scratches or anything, but after some minutes I started feeling drowsy and seeing all these dots in front of me. Then they expanded and I lost my sight, and I couldn't really talk. I went to the bathroom completely blind and just relying on the walls for some direction, cause in the meantime I was also starting to lose my hearing. I started breathing heavily, but when I arrived to the bathroom and stayed there for a while it started to fade and everything went back to normal. Except I was feeling tired and drowsy.

The sleeping apnea could be a thing, yes. Never got tested for it though and everything always seemed normal to me.

But yes, I'll go see a doctor as soon as I can just to figure out what this can be.
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Re: Question about seizures?

Postby birdsong87 » Mon Jun 10, 2019 1:21 pm

from what you say it could be anything. from panic attack to brain injury.
see the doctor.
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Re: Question about seizures?

Postby Una+ » Mon Jun 10, 2019 1:46 pm

A seizure is a seizure. Epilepsy is one of many causes of seizures.

In young children seizures are common and usually benign, meaning not a symptom of any disorder.

Do you have consistently low blood pressure? If you do, then even mild dehydration or shock can cause fainting and numerous other symptoms.
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Re: Question about seizures?

Postby Allcoulors » Tue Jun 11, 2019 11:25 am

I have fainting spells like you describe, losing hearing, sight and speech. Sometimes shaking as well. For me its dissociating and has to do with other parts. But it could be anything as others have said so go see the doctor to find out what it is for you.
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Re: Question about seizures?

Postby Zor » Tue Jun 11, 2019 4:47 pm

birdsong87 wrote:the 'fainting' does sound like dissociation.
there are more reasons for seizures than dissociation or epilepsy eg getting little oxygen.
my best bet would be some kind of sleep apnea that also caused hallucinations.
if it happens again it would be very wise to see a doctor. none of the reasons for seizures is a happy one.


Allcoulors wrote:I have fainting spells like you describe, losing hearing, sight and speech. Sometimes shaking as well. For me its dissociating and has to do with other parts. But it could be anything as others have said so go see the doctor to find out what it is for you.



Funny this comes up.. years before I met my alters online as "friends" (which I knew them as for a decade before knowing I was DID)... I had sudden onset of random blackouts they THOUGHT were seizures. I was disabled and medically separated from the military (I was active duty at the time). They did a bunch of tests, observations, and tried various medications- none helped (some meds made it worse)- and found NOTHING.
They moved on to thinking it was my heart, a neurological signal to the heart or a blood pressure problem. I had to wear compression pantyhose for months and did a series of heart tests, nuerological tests (different from the EEG for epilepsy somehow) and eventually THOSE all showed nothing.
About 4 years after they started I was sent to another neurologist (the first was a specialist for epilepsy, this one was not) and she determined it was likely Narcolepsy... We lived with that belief for nearly 10 years... even being on meds at night (Xyrem, the medical version of the "date rape drug") and day (90mg of Amphetamine)... and no luck controlling it.
Finally in the Veteran's Affairs hospital system, a sleep doctor there did sleep studies and tests, found it wasn't narcolepsy and got me off the meds (thankfully- they had a TON of problems they caused).

NOW, it's a condition without a know physiological cause... just a few weeks ago my T suggested that MAYBE it's related to the dissociation, along with what I perceived as periods of insomnia or constant exhaustion/sleeping (which seems to have entirely stopped once I started having blackouts).

When I say blackouts, I mean full seizure-looking loss of consciousness, sometimes complete with twitching and spasms (but not all the time). Generally I can be mid-step and just fall like a sack of rocks. No muscle control at all.

Honestly, part of me hopes it IS psychological somehow- that this is connected to the dissociation. For most of the past 17 years I've lived with NO HOPE of it getting better or controlled, even just a little. Thinking it COULD BE mental gives me SOME hope that MAYBE we'll get some control over it in time... and that's something I've not had in a very long time.
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Re: Question about seizures?

Postby Una+ » Tue Jun 11, 2019 6:52 pm

Zor, I think you have good reason to be hopeful. From what you describe, epilepsy has been ruled out thoroughly and other organic causes have been investigated so your seizures likely are psychogenic non-epileptic seizures (PNES), which is just another name for dissociative seizures. There are lots of threads here about PNES. The current best evidence-based treatment of PNES is with talk therapy, which is highly effective.

And thank you for not driving!
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Re: Question about seizures?

Postby Zor » Tue Jun 11, 2019 7:35 pm

Una+ wrote:Zor, I think you have good reason to be hopeful. From what you describe, epilepsy has been ruled out thoroughly and other organic causes have been investigated so your seizures likely are psychogenic non-epileptic seizures (PNES), which is just another name for dissociative seizures. There are lots of threads here about PNES. The current best evidence-based treatment of PNES is with talk therapy, which is highly effective.

And thank you for not driving!


No need to thank me for common sense... The last time I drove anywhere I apparently felt one of those things coming on and parked... and was unconscious in the car for a few hours before someone found me. That was terrifying. The idea that it could come without warning (and it DOES most often) and cause me to lose control and harm myself, or worse yet, someone else, is a risk I just will NOT take.

I have driven just twice in the past 15 years or so- both times ONLY in emergency.

I REALLY REALLY hope there can be some progress on getting that at least SOMEWHAT under control- maybe just to have a warning to safely stop whatever I am doing... so that I CAN drive again. It's so isolating, paralyzing, and segregating to NOT be able to. It strips you of independence and agency... removes capability... it's terrible. It's not something I'd ever wish on anyone- especially one with other issues already to contend with. :?
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Re: Question about seizures?

Postby Una+ » Wed Jun 12, 2019 1:06 am

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?
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