How many more choices do I have? - Epilepsy Message Board

proud2BMrsD · 04-24-2006, 06:32 AM

I am currently on Zonegran but I don't like it. I think I've been on 9 meds in 30 years. Depakote worked great on seizure control but I gained 90 pounds and lost a lot of hair. I didn't have much to start with! That extra 90 pounds caused other health problems. Depakote also gave me tremors but I was still the best at Jenga! Zonegran is my 5th medication in a little over 3 years but it is causing my migraines to become quite frequent and I am having breakthrough absence seizures at 400 mg. Had a grand mal at 300 mg. See the neurologist Tuesday. Not sure how many more meds there are to try. Allergic to Dilatin. Taken Phenobarbitol, Topamax was great for weight loss but didn't control the seizures, Lamictal didn't work either. I tried Tegretol and Zarontin as a teen but don't remember if I took them steady enough to give them a chance or why they didn't work. Can't remember the other meds right off hand. The grand mals aren't frequent but can be if my meds aren't right. I have the absence/petit mal seizures almost like an aura to a grand mal but I can have them all day long. Docs find that strange. Thank God for my Prince Charming!

Mrs D.

Travis from MN · 04-24-2006, 10:39 AM

I hope you are more than aware Zonegran and Topamax are closely related.

I had the exact oposite problem with Z (drastic weight loss); that effected another of my meds in turn to go through the roof. I was switched to Topa which has been working for me. Zonegran I only was on 3 weeks I think, never reached target dose.

They could keep going down the list of other meds you have yet to try; plus there are two BRAND NEW ones out that I don't even know the names for or side effects of.

Are you able to see an Epileptologist, epilepsy specalist or only a neuro? That may also help.

--Travis

proud2BMrsD · 04-24-2006, 11:19 AM

I didn't know there was such a person as an Epileptologist! My neurologist is actually smart and kind if that makes a difference. Neurologists with a bedside manner are hard to find. I'll have to ask about the Epileptologist though. As long as I'm referred I can go to anyone my family practice doc says I need to see. My last neurologist suggested the VNS therapy.

neurowreck · 04-24-2006, 01:49 PM

I worked with someone who had great results from the VNS.

I also had bad tremors with Depakote, my liver enzymes went nuts with Dilantin, can't afford Neurontin (and it's an 'add on', not a primary med for seizures that secondarily generalize), did well on Carbatrol- can't afford that now, so back to plain carbamazepine, clonazepam, and as soon as I can find a source for cheaper Neurontin, back on that (generic was ok)- think I did find one- just waiting for my doc to send a written rx to include with my order.

aussie308 · 04-24-2006, 04:40 PM

Hello, you sound a lot like me in your seizures and problems with meds! I have always had weight loss tho. After trying 10 meds. in 3 years I requested a VNS. Am I ever glad I did!!! I've had it approx. 1 1/2 yrs. and have gone from 7 or more petmals every month and at least one granmal a mo., to 1 or 2 pts. a month and I had my first granmal in 6 mo. last week. I get gms. when I'm under a lot of stress (that day my prince charming cut his leg with a chain saw!)

The surgery was same day for me and there was very little pain after the first few days. If you have any questions I would be happy to answer them. I couldn't make it without my prince charming either! Good luck!

Laura