Hi to Everyone here, It’s been awhile since I’ve written anything.
I had 2 craniotomies for AVM (old school where they saw your head open) and I’ve had seizures ever since. At some times very debilitating professionally and emotionally (like now.)
I got COVID and then had 2 major seizures that landed me in the hospital.
That may have triggered terrifying memories from the 2 months I was in for the AVM operations. I also had a bad dream about a week ago.
I’m having a rough time. My rhythm is all off and I have some paralyzing fear.
I have/had very good progress writing a book and started a less stressful career than the law. I’m proud that I passed a semester of prerequisites and may have an offer for publication if I can finish editing. But I’m pretty well stuck. I’m isolated, first from the COVID then from shame from the seizures (my face was banged up.)
So, on the emotional side I am more asking for support than offering any.
I’ve been through the mill of epilepsy meds (I’m not exaggerating.) I’m on lamotrigine now because it provides a decent level of control (obviously not that great.) And I had a good quality of life.
Getting the right med for balancing control and quality of life is tricky. Kepra was a train wreck for me. (Impulse control, anger/aggression)
My only concrete advice is to be grateful for every day. It can be lost in a heartbeat.
GAW
Hi Raf, I’m glad you haven’t had a seizure since Jan.
I can’t recall ever being diagnosed with seizures after my AVM rupture, but I take a seizure medication. I am assuming I will have to take it for the rest of my life. No doctor has given me any indications to the contrary.
Hey michaelf,
I too was given seizure meds post craniotomy, with no history of seizure.
It was explained to me that a seizure is like an electrical storm in the brain. The medication was to regulate/control the electrical signalling, reducing the likelihood of such a storm occurring.
Sometimes the electrical misfiring can cause all sorts of odd side effects including headaches. I was trialled on differing epilepsy meds as a headache management tool, without any great success.
Merl from the Modsupport Team
I haven’t tried any other meds. I don’t think my doctors saw the need for those medications. I have been pretty stable for years now so I haven’t been back to the doctor yet.