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Functional Neurological Disorder - FND Hope

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dissociative seizures?

hazmatrec profile image
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hello! I'm learning words and phrases associated with my fnd symptoms. I get what I usually call a blank out, where my muscles usually go some degree of slack, but sometimes some muscle group goes really tense, my speech devolves to single word or no word, and sometimes I become unresponsive. I don't remember the time block from just before slack to some time after, and sometimes it seems (to an observer) that I fall asleep. I think sometimes i do. after, I usually feel like I have been hit by a truck. muscle aches, bone weary, and quite often a pretty harsh photo sensitive migraine. I've learned this is 'post-ictal', I think. I went through neurology when these first started and was told they are dissociative seizures, non-epileptic. but, conversely, looking up postictal, one of the things that was part of every definition was that dissociative seizures don't cause post ictal effects. sho, logically, either I'm not having dissociative seizures, or what i experience are not post ictal effects. does anyone have an idea? thanks for conversations.

cath

this post has been edited. mostly, that I didn't mean absence seizures! thanks!

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Chingona profile image
Chingona

One of my main symptoms is seizures and I was diagnosed with temporal lobe epilepsy due to my symptoms and epileptic forms on my EEG. My new neurologist has been trying to diagnose me FND and so he thinks the seizures are non Epileptic saying that having an abnormal eeg doesn’t mean I’m Epileptic while also admitting that he’s a stoke doctor and didn’t study epilepsy. So I’ve gone through researching the difference between the two and found the same as you about the post itcal state( which I also have) another thing I read is having eyes open ( epilepsy) eyes closed (PNES) and the length of the seizure, short ( epilepsy) long ) PNES, also that PNES people tend to thrust their hips. The problem is that none of these things are 100% accurate for everyone.... so back to square one. They say that unless you have a seizure while hooked up to an EEG there is no way to really know and even then the EEG Can only reach surface brain activity!!! So I feel your confusion and pain. I’m certain that I have epilepsy because of my original diagnosis and i did a lot of counseling and learned techniques to stop PNES and I didn’t have any success with it. They only this that had dramatically reduced my seizures is the keto diet. I wish you luck in figuring this out!!!

Justdrea81 profile image
Justdrea81

This happens to me. It used to be much worse, but I've found some techniques to help with it. If I'm sick, tired, or stressed it definitely gets worse. With practice, I've learned how to reduce them. I still get a terrible headache after, but it usually lasts 20 minutes or less. I've been using binaural beats, which seems to help get my brain back on target. I also had 3 months of OT, and I have an appointment with the biofeedback clinic at Mayo later this month. With all of this, I have learned to reduce the symptoms. I have accepted I may have these issues permanently, but I don't want that to dictate my life anymore. I have even learned how to drive again, as long as it's not at night.

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