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my first seizure was yesterday

johngiustino
Posts: 26
Joined: Apr 2011

Since my GBM 99+% resection in October 2010, I have been going into work on a regular basis and overall have been amazingly functional (no sign of tumor at a recent MRI). Yesterday what was normal changed. I had a seizure at my desk. A coworker found me on the floor shaking for a minute and called 911. After I arrived at the hospital I had another in front of the ER doctor and my wife. My life is now even more changed than it was before - no more driving and I have to live in fear of when or might I have another seizure.
What are people's experiences with seizures when diagnosed with GBM. Are they frequent? Any idea what to expect? Am I crazy to think about going back to work? They put me on Keppra.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

No your not crazy thinking about going back to work if thats what you want to do. The keppra should help. You may never have one again. You can get your licence back I think it takes about 6 months with out a seizure.
The most important thing is why did you have one? Were you not on seizure meds before?
My sister had one, or so they said it was one, we are not really sure. That is how we found out she had GMB4. She went on keppra and has not had it happen again.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

No your not crazy thinking about going back to work if thats what you want to do. The keppra should help. You may never have one again. You can get your licence back I think it takes about 6 months with out a seizure.
The most important thing is why did you have one? Were you not on seizure meds before?
My sister had one, or so they said it was one, we are not really sure. That is how we found out she had GMB4. She went on keppra and has not had it happen again.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

No your not crazy thinking about going back to work if thats what you want to do. The keppra should help. You may never have one again. You can get your licence back I think it takes about 6 months with out a seizure.
The most important thing is why did you have one? Were you not on seizure meds before?
My sister had one, or so they said it was one, we are not really sure. That is how we found out she had GMB4. She went on keppra and has not had it happen again.

panormitis
Posts: 16
Joined: May 2011

if you have the right medicins it is not necesarry to have seizures again. My husband had one seizure on the 6th of april last year and that was the only one he had. Ofcourse he is on medicins for this. he has GBM grade 4 and had brain surgery one year ago.

wishing you luck and please think positive, it helps!!!

Hetty Gambieraki

micgrace
Posts: 131
Joined: May 2011

Did you have anything else besides the resection? These things just don't go away easily and often return. Having seen some seizures with my wife post surgery they are pretty unique to GBM compared to say, a petit mal or gran mal type seizure. My wife had a shunt to reduce cranial pressure and this appears to have eliminated the seizures. She has lost considerable functionality unfortunately as there was no prior symptoms until lack of functionality showed up.

We hope and pray yours is gone for keeps as I hope and pray my wifes will been eliminated for keeps over the coming months post surgery via radiation and chemo.

johngiustino
Posts: 26
Joined: Apr 2011

I was actually at the end of my 6th 5/23 cycle when the seizure occurred. They called it a tonic clonic and it sounds like I had a classic one based on what I read online. I hope it to be my last now that I am on Keppra. Thank you for your support.

-JG

henryr
Posts: 2
Joined: Mar 2011

I am going through the same thing. I have lots of mild visual seizures and occasional terrible seizures where I lose speech and visual awareness, etc.

I am on Keppra. It works for most of the time. The doctors are now convinced I need a VNS, and I am terrified. If you dont know, a Vagal Nerve Stimulator is a pacemaker for the brain, and many people experience MANY horrible side effects.

There is Dilantin, Lamictal for some, Topomax, and many others depending on the situation, but NOTHING stops them all unless surgery can pinpoint and remove the cause.

I cant drive after my recent large seizure, placed on permanent disability and I cant work or attend college. Sucks big time. And I am 34.

I feel what you are going through. Keep asking questions, and look into side effects of suggested treatments, and try to see an epileptologist.

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