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A vent session: Suffocating and then Seizing


Hey guys,

Long time seize-er, first time poster. I am a 21 year old college student and I had my first seizure when I was 17. I have probably had 10-12 since then and each of them has been coming out of my sleep. Each time I will wake up in a panic and can't breathe no matter how hard I try. I literally will just suffocate until I pass out. It is probably the most terrifying feeling of all time just waiting for the inevitable demise. One time I happened to catch my breath but that seemed to be a miracle. I have tried punching myself in the stomach and I have attempted grabbing my tongue to make sure it isn't lodged in the back of my throat. I used to panic since I was new to seizures and I would get up and run to try and alert somebody because I thought I was dying. This turned out to be a big mistake each time since I have faceplanted on multiple occasions. One time I got a carpet burn on my mustache area. Another time I faceplanted on my PlayStation and that left a big mark. Now I am trying to train myself to just accept my fate, lay back down, and just seize quietly. After suffocating, I've been told I will just go rigid and flail for 60-90 seconds. I've often bitten my own tongue hard to where it will bleed. All of these seizures will come without warning other than the fact that I can't breathe all of a sudden. It comes each time immediately as I am coming out of a deep sleep and waking into a sudden panic.
Upon waking I am always incredibly sore and confused and sad. The worst part of the entire ordeal is the short term memory loss. I won't be able to remember anything from the day(s) before until my friends and family help me recollect. I hate feeling embarrassed by epilepsy but I often have. I can joke about it all day long but each night I am somewhat afraid to fall asleep. I have now had two seizures during short (20-40 min) naps, and that freaks me out. I am a college runner so I nap all of the time. This new development scares the crap out of me since I rely so heavily on sleep to stay healthy and motivated for college athletics.
I am on Keppra's generic alternative Leviterecatem. I take 750 mg twice daily. The medicine put me through depression and made me drowsy and incredibly up and down in mood this fall as I was increasing my dosage from 500mg to 750. Ever since I've gone up to 750, my frequency of seizures has increased. I've seen a neurologist and gotten an EEG and a sleep study and it didn't reveal anything. They call it "Cryptogenic" Epilepsy. To me, that sounds like they have no idea what it is since Crypto means unknown. My mom has been trying to get me to make sure to take the medicine at the exact same time each day so I have started taking it at 9am and 9PM but even so I have seized since beginning that regimen. I'm sorry for just venting non-stop, but I have so many questions and opinions I'd love to hear. If anybody identifies with anything I've been saying please let me know. I'm open to suggestions as well.

Some common themes: The seizures happen closer to the morning (the AM portion of nighttime. Every time has been suffocating until passing out. Every time has included short term memory loss. I have food allergies (caffeine, red meat, onions) so maybe they play a part. According to a couple of friends who have been (un)fortunate enough to witness these seizures, my seizing lasts about 60-90 seconds and includes a rigid body and sometimes flailing limbs.

Thanks for reading. God bless.


PS- I would recommend only

PS- I would recommend only brand name drugs- no generic substitutes if possible

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