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Zonisamide & Vimpat -- For Grand-Mal?

Tue, 03/31/2015 - 15:40

Hi, I had a question for everyone here about these two drugs. My last neurologist took me off of Dilatin and Phenobarbital because he said they were old fashioned. I was hesitate in being taken off these two because I had been seizure free for about four years. So my neurologist weaned me off of those two and put me only on Zonisamide 300mg to 400mg. They never did any blood work on me or anything just based everything off of my reaction. I eventually got up to 600mg but  it was too much for me to handle because I was having orbs. So they lowered me down to 500mg and that is where I stayed.  Well about a months after being put on this I medication, I was out for a run and had my first seziure. I was able to walk home which was unheard of for my type of seizure. After I told them about that incident, they pu me on Vimpat (200mg). This medication was way to expensive for me which is what I told them I didn't want to use. But they pushed, and I got on an assistant program which helps pay for it. About another 4 months after the first seizure, I had another one, this one was because I had drank alcohol (which I could do before on my other two medications D&P). I suffered another strong seizure. I told my doctor, he scheduled an appointment and I went to see him. He did nothing for me, no blood work, no EEG, nothing except tell me not to drink alcohol. 4 months after that I had another seizure. This one was uncalled for, I was excercising (might have overdone it just a bit), I was eating healthy, had quit smoking, was excercising everyday. I was pedaling on their excerise bike and had one. 4 months after that I suffered another seizure due to food poisioning and spent two nights in the hospital. 4 months after that I suffered another seizure that happened for no reason yet again after going out with my wife (she was driving). Every time I told my doctors, he would simply tell me to come see him and do nothing to change what was going on.
That is when I decided to switch doctors and found my new neurologist now. Who went over in very extensive details of my past history of medications, what worked, what I liked best. He talked about what he thought was best and gave me several options (other doctor did not). I was then put on Dilantin and Vimpat. After being put on this drug I started to do some research after my doctor told me that normally he gives Zonisamide to people with headaches. I also found out that Zonisamide is to treat partial complex seizures. I suffer from Tonic Clonic Grand-Mal seizures. My doctor was very aware of what type of seizures that I suffered from. Also the side effects were so bad for me, I was having memory loss and trouble focusing. Things I felt uncomfortable talking with my old doctor about because he was in and out with no personal care.

Now here it is 4 months later, I am getting taken off of Dilatin because it's not strong enough for me. Though I have not had anything more than a mini-seizure which I was fully awake for, for the first time in over a year. I did not convulse. I have had auras which is why my doctor has decided to put me on Keppra and Vimpat. From what I have heard from a friend of mine who is also suffering with seizures, he has liked Keppra very much. It gives him energy and he feels less depressed. He is more focused which is something that I miss. I just wish I had known sooner instead of putting my trust in my old neurologist about my care, because I am several thousand dollars in debt, have PTSD and I will eventually have to have surgery again on both of my shoulders because I dislocate them every time I have a seizure.

I was just wondering if anyone has an opinion on this situation? What they think of these drugs? Have you ever been put on these medications to treat Grand Mal? Any information or insight would be extremely helpful.

Comments

I'm on dylantin they put me o

Submitted by renegaderecords23@gmail.com on Sat, 2015-04-04 - 19:12
I'm on dylantin they put me o. Keppra an it made me sleep most of the day an not hungry I lost like 40 lbs 3 weeks an when I worked out at the gym it was like one set an I was whipped out berly get up to my apt up stairs then march 7 2015 I had grand mile seizure I was dead before I got to the hospital not breathing now I diagnosed with accute kidney.failure close to it so now I'm fight that an it made me illusinate like craze balance was off so I'm back on dylantin I had no problems I feel like my self not like something controlling me I don't sleep all day some time lil nap but most part I'm up all day feel great since I been sleep for about 8 months lol so keppra not a good for any one an it cause siezerurs I had two in the hospital with iv in me with keppra so that tells you hope this helps

Hi - So did you then started

Submitted by arc on Wed, 2019-02-06 - 18:29
Hi - So did you then started Zonisamide and stayed with it? I am M 48 and have periodic tonic clonic seizures every 1 or 2.5 months - Or did you take keppra or vimpat or some other combination?~arc

Hi there - I'm on vimpat and

Submitted by Clare97 on Sat, 2019-03-02 - 11:15
Hi there - I'm on vimpat and topamax for grand mals and partial seizures. Vimpat is SO expensive! But it seems to be the only thing that has worked for me. I was grand mal free for 7.5 months until Jan. 2019. I've tried keppra which made me act crazy, and didn't stop the seizures, then lamotrigine which didn't work either. I was having grand mal seizures out in public which was dangerous about every 3 months since I started having them 2 years ago, at 23 years old....and partial seizures at work fairly regularly. So we switched to vimpat and topamax about 5 months ago. I think the topamax combination is what's helping but I want to get off of it since I also have had kidney stones in the past. I honestly can't find online if vimpat works for grand mals? and I just had that grand mal Jan. 20th. My Dr is a "genius" according to another Dr in the city who I got a 2nd opinion from. But he doesn't seem up-to-date with my records when I see him and I'm scared because of the breakthrough grand mal I recently had. I was paralyzed both speaking and moving my body for an hour afterward (the longest time ever for me). But yes, I am on it to treat my grand mals specifically. And my Dr has been treating epilepsy for decades so I am told that he knows what he is doing. Hope this helps. Clare

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