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Does anyone else get sensory storms that trigger tonic clonic convulsions? The ER docs claim I have Psyhcogenic non epileptic seizures because I had spells suring a short eeg but no eleptiform activity. However, in all descriptions of PNES they have given me, my symptoms just DO NOT match up.
My episodes start with this feeling like my stomach just flipped (like when you drop on a roller coaster), my brain gets fuzzy and off, and I feel like something is bad/not good, but then my eyes roll up, I fall backwards, my back arches, and my whole body starts to shake for 5-10 seconds.
I am usually mostly concious during them, but I miss some of what is being said or going on around me. The more I have in a row (sometimes 20 or more one right after the other) the less concious I become during and inbetween them.
I can't stop the movements no matter how much I try, I often hit my hands and head on things that are in the way. I can not talk or respond in any way while they are happening and for anywhere from 30 seconds to 5 minutes afterwards. No crying or screaming afterwards either.
Once the shaking stops, while I was aware of the shaking, it seems like I slowly become aware again of my body, and it hurts! It takes a while for me to be able to move, and often someone will have to move my head, legs, and arms back into comfotable positions afterwards.
I have severe migraines and exhaustion afterwards. Sometimes I will have trouble forming words or sounds afterwards once I am able to respond, and/or trouble just even having the energy to speak. I do not lose my bowels or bladder and anti seizure meds don't slow them down very much (not to mention I am apparently allergic to ativan).
I recently came across notes about the sensory storm thing on hummingbird foundation and about how you can be concious during them and the description from someone else on this site (aura, feeling of dread, feeling like tou are about to lose conciousness, needing to stop all sensory input) sounds exactly right, but it doesn't say if you can have the tonic clonic movements along with it? Anyone know or have their own experience to share?
My episodes start with this feeling like my stomach just flipped (like when you drop on a roller coaster), my brain gets fuzzy and off, and I feel like something is bad/not good, but then my eyes roll up, I fall backwards, my back arches, and my whole body starts to shake for 5-10 seconds.
I am usually mostly concious during them, but I miss some of what is being said or going on around me. The more I have in a row (sometimes 20 or more one right after the other) the less concious I become during and inbetween them.
I can't stop the movements no matter how much I try, I often hit my hands and head on things that are in the way. I can not talk or respond in any way while they are happening and for anywhere from 30 seconds to 5 minutes afterwards. No crying or screaming afterwards either.
Once the shaking stops, while I was aware of the shaking, it seems like I slowly become aware again of my body, and it hurts! It takes a while for me to be able to move, and often someone will have to move my head, legs, and arms back into comfotable positions afterwards.
I have severe migraines and exhaustion afterwards. Sometimes I will have trouble forming words or sounds afterwards once I am able to respond, and/or trouble just even having the energy to speak. I do not lose my bowels or bladder and anti seizure meds don't slow them down very much (not to mention I am apparently allergic to ativan).
I recently came across notes about the sensory storm thing on hummingbird foundation and about how you can be concious during them and the description from someone else on this site (aura, feeling of dread, feeling like tou are about to lose conciousness, needing to stop all sensory input) sounds exactly right, but it doesn't say if you can have the tonic clonic movements along with it? Anyone know or have their own experience to share?