Discouraged over siezures getting worse!

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Brookbaylor

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Two Weeks ago Sunday at night I experienced three grand mal seizures, my new husband had never experienced that with anyone before so it scared him. When he got me woke up on the third one I was still posturing, and I had broke a molar. When I was first diagnosed they were only partial complex in the temperal lobe, as I have gotten older they have gotten worse. The next night I had two more. So he took me to the ER. The CT scan showed a cyst in the basil ganglia area but said my neurologist needed to do a mri. This has been discouraging because of the type of work I do and the fact that I am a biker. I would hate to lose my licenses due to these seizures not being under control. I was considering the VNS but after reading alot about it not sure how well that would work for me. I hate being on this Zonisamide, I am have the depression and mood swings really bad.

Has any one else had the experience as they got older they got worse? With the meds they have now, I don't want to feel like a zombie, but I don't like this being depressed either.
Tomorrow I will get to see my CT, MRI, and MRA to see how my brain looks and if there is anything to be worried about there.
 
Hi Brookbaylor, welcome to CWE!

I expect you'll get more info tomorrow on what any next steps might be, but you might want to try a med other than Zonisamide. I was on it for about 6 months, and it ultimately made things worse -- not only did it make me depressed and angry, but it also made it very hard for me to eat. Since low blood sugar is a trigger for me, the Zonisamide ended up causing seizures rather than controlling them.

I'm now on Lamictal. It's certainly not perfect, but it has controlled my seizures without causing any mood or cognitive issues. If changing meds isn't an option you might look in to trying neurofeedback to help control your seizures. More info about that here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Best,
Nakamova
 
Good luck for tomorrow, Brookbaylor. Try not to look at the larger picture; take a step at a time.

Nick
:)
 
Good luck tomorrow I hope things work out. Taking things one step at a time is great advice.
 
I was diagnosed with epilepsy 9 years ago. I wasn't able to have brain surgery so I got a VNS. It's helped me a good bit with my seizures. I very rarely had grand mals before I got it but I have had just about every other type.

Since I got it I might have 1 grand mal a year and I'm having alot less seizures aren't they nearly as bad.

I know it's hard to loose your license and not beable to drive, but I'd rather have it that way than be behind the wheel and have a seizure. I could end up killing myself or other people.

Good luck.
 
I was dx'd with epilepsy when I was two. I had brain surgery in 1982 and meds just didn't control me.
I got my first of 3 VNS's in 2000 .

What has stopped my seizures isn't a drug or surgery it was a heart pacemaker.
Belinda
 
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