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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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TrippyNoodle

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Hey guys! I've never been apart of a forum before but this one looks pretty friendly, I hope that my posting ettiquete is adequate.

To cut to the chase,
I had hundreds of seizures over a 5-year period where I underwent the crazy testing (EEGs, MRIs, EMU, etc), various medications, side effects, professionals, guilt/shame/mental health, the works. I mainly experienced focal seizures, tonic-clonic seizures, and some PNES. Then they found the brain tumor which was successfully removed, I am now seizure free for 5 years in August 2024. :)
I still get regular MRI's, I tapered off my final meds this year, and I have a final neurologist appointment in 2025.

Although, I have been experiencing strange body twitches to complete body paralyzations once every few months after extreme stress since coming off the meds. I am interested to see if anyone has experienced anything similar when coming off epileptic meds after being on them long-term. (Full body clenching with no loss of consciousness or ability to speak freely)- but my neuro says it's "likely not related to the tumor" as it was mostly removed.

I'm hoping to support others coping with epilepsy as well as make some connections on this site- thanks :)
 
Hi TrippyNoddle,

Welcome to CWE! I never had a tumor but I have had absence and complex partial seizures for 52 yrs. and then
when I was put on Neurontin (gabapentin) the seizures got worse where I was out of it for almost 1 hr. and that's
when I found out that this drug can cause seizures after watching a special in NBC Dateline about it

Each time I've gone off a seizure med and been put on a new seizure med it always triggers seizures for me and
there had been times during the seizures where I'm conscious, but I can't speak. My neurosurgeon told me a lot
of that had to do with cell phones and that's when they did a e.e.g. on me and I didn't know it but my Dr. was
purposely using his cell phone and each time he did it caused more electrical activity in my brain which in turn
triggered seizures. They found out that I was sensitive to the frequency the cell phone uses.

You will get a lot of help here. Everyone is so kind and helpful. I've been here since 2016 if I'm not mistaken.
I wish you the best of luck and May God Bless You!

Sue
 
Welcome to the forum.

I thought I'd welcomed you, but clearly I hadn't. I'm sorry.
Hopefully this site can be a useful resource for you. We talk about all sorts of stuff.. not just our epilepsy. There are games and such as well. I joined because I didn't have family and friends around me, and I can honestly say that I see this forum as a bit of a family myself.

Also I followed you
 
Hello, & welcome. I have had simple partial seizures since childhood--they weren't recognized until I suddenly had a few tonic clonic seizures back in 1987--none since. I suddenly began having complex partial seizures about 25 years ago. I've taken nearly EVERY AED out there. It's as though my brain becomes "immune" to them after a short period, & breakthroughs start again. I'm currently on 500mg Zonisamide & 250mg Xcopri/day.
 
Welcome. Do hope this place is good for you. It is great that you have 5 years with no seizures!
 
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