Epilepsy & Seizures Support Group

Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...

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Brain & Nervous System
/ Epilepsy & Seizures Support Group

Seizure help when Keppra isn't working

carnut
carnut

I know, see your doctor...my neruologist is one of the best in the western US, he is very busy, so I'm not able to work very recently, my seizures have ramped up to about every 10 or 15 minutes to every half hour, these are very mild or just unable to speak properly. I work in customer service, commuication is important. My health insurance is fighting the MRI scan, Dr says his hands are tied, he also does not condone MM CBD/Terpenes therapy. I feel this is my next hope to stop the seizures and get back to working again.



My background, I had a giglioma removed on my brain right side near the motor skills area just above the ear in 2016. I suffered many major seizures, eyes rolled back, mouth foaming, bladder released and worse, unable to breath. I thought I would die many times. 500mg Keppra twice daily kept them in check for 11 years. Now, I have these minor ones every 10 to 15 minutes and a few moderate ones that knock me out. 



Dr. hasn't been in touch in over a day. I asked his asst for a referal, I live in AZ, I think I might go the MM route, low THC, high CBD for some control on this, I'm absolutely terrified! 


I don't think this site gets a lot of action, I'll wait and post my findings with what I do, thanks, and bless all looking for relief, carnut

Khadi
Khadi
Hi carnut, I know, we don't get a lot of "action" on this site...too bad. I no longer have full-blown seizures either but lately I have these short periods where I slur my words, can't type or read, I feel confused. I was thinking it was just stress and exhaustion but now that I read your post I am wondering if it is more. I take clonazepam and it is the only thing that has ever helped me but I have been on it for a long time and have been under crazy stress lately, a real trigger for me. I never had seizures as bad as your's were, so sorry. That sounds terrifying.
Do you ever feel just tired of having a brain that is all wonky? I wonder sometimes what it feels like to just have a brain that works normally without all this effort! Tell me more...xo
carnut
carnut
Hello Khadi, yes, I'd like to have a "normal" brain again, I think I remember what it was like long ago. I have been so very proud that I am able to work and engage with others, make them laugh and have fun...I feel like I'm compensating in my interactions lately and I don't like that, it's not ME just being ME anymore.


My MRI scans were scary, my tiny tendril tumor has grown into a slightly larger than a golf ball in two years, hence my increase in minor seizures lately. I must go through another major surgery to remove the mass on July 26th. I'm not looking forward to this but, it must be done. I have a big network of friends, family and co-workers...and hopefully, my new friends here for support and will update when I can.


Since I just found out all this yesterday morning, I'm having a private pity party with myself right now. I hate having to go through this again and would not wish this on my worst enemy. It's getting out of the "why me crap" and into the getting positive about the situ that will help me, I know and understand that. Doesn't make it easier, life ain't easy folks, we all have something to bear and lessons to learn, I'm blessed to be a part of this group!!