Vimpat, a new AED, has anybody else tried it

[Meisterin]

I am so happy to read all the feedback on this subject. I absorb meds to quickly or so i am told- plus my allergies to most meds keeps me taking one at a time. Maybe thats why only vimpat?? Not sure. My older brother had constant grand-mal seizues and only took Dilantin.
On Dilantin for 2 days now feel a bit like in the dead zone> still having complex-partial and abscense seizures--talking on tongue and not quite sure if i really did something or not, like turning off the water, or eating--you know the basics! also feel very angry at times, but the extreme tonic phase of jerking has stopped--so grateful. I am worried about hair loss and weight gain.
Good to know other people walk around in circles. I am happy my auto pilot has exceptional capabilities. I once followed an associate around campus for what seemed like an hour because he had a familiar face and I didn't know where to go. Nothing looked familiar. He didn't seem to mind -he had a grand conversation with someone! I know i could not remember a single word he said after hello. Epileptics give knew meaning to the phrase, "Not of this World".

[peachy]

I am on 400mg a day. Started a month ago and it seems to be the first that has helped and less side effects than dilantin and trileptol.

[stilldancing_98]

me.me.me.me. I have been on it for almost for almost a year and it will be a year that I will be grand-mal free. Forget the other seizures. But the biggies are good.Have you looked up Vimpat.com?

[lynnrx52]

Greetings all. Very happy to find this thread. My son has been through the gamut of seizure types throughout childhood finally winding up with just gran mal). He is now 30. He has multiple disabilities including difficulty describing or expressing pain and discomfort so it is very helpful to hear from those who have the cognition to tell what they are feeling.

Background: My son is currently taking Zonegran, Trileptal and Vimpat. We have been on many types of anti-epileptic drugs in the past. Depakote was most successful for most of his life until recently. Seemed over a period of time it became toxic for him in a number of ways. We recently switched from Depakote to Vimpat (two month titration on V off D). We are now on 150mg 2X/day of Vimpat plus the Trileptal and Zonegran for the past 5 weeks and completely off Depakote for past 2.

Minor transitional issues but biggest concern is constipation and gastrointestinal disturbance. This was a problem with the Depakote and I was praying it would get better once on Vimpat but it suddenly seems to be getting worse. Could it be temporary? Can anyone out there relate? Thanks so very much for any responses.

[lonnie]

I had Vimpat added on to my lamictal. Of course I don't like the cost. I didn't like the side effect of suicidle ideation which can be one side effect at start. But with it and other measures such as this support group I have just experienced the best three months in 17 years.
Lots of luck and best wishes lonnie

[stilldancing_98]

I am off of Vimpat now. But I am on so many other meds. My epileptologist wants to put me on Banzel. He sais that I don't have Lennox-Gastaut Syndrome but I do have severe epilepsy. I don't think I'm taking the chance.

[appsandsuch]

stilldancing- why did you stop Vimpat, if you don't mind me asking? I recall you were doing well on it.

[lynnrx52]

Yes, I'm also interested in knowing why you stopped the Vimpat. Never heard of Banzel. Thanks. Lynn

[Westy]

Up until recently i was on Vimpat for nearly a year. It was the latest in a very long line of meds my neurologist thought might once and for all control my seizures, coz this one has apparently been effecting with people who have previously had no control with meds...sadly for me it did nothing but cause side effects like severe pain down my left side and pins and needles in my hand, constant migraines, bloating, constipation, tremors, fuzzy thinking just to name a few!

Im hopeful it will help others to finally get control of their seizures.

All the best

Westy

[stilldancing_98]

I was so sleepy. And I have a 13 year old with epilepsy. But good recall. I am back on it. Just at a lower dosage.I do forget a lot more and I get tired But all around its better than having tons of s. Thank-you for asking.Oh Westy, this sucks. Your attitude is sweet, but you need to take care of yourself. Banzel is another New Med. Maybe working somewhat working like Vimpat. I decided I did not want to go on to it. Maybe later. Soon things will tweeked again. I just had two more t/c 's. I am just to busy to feel sorry for myself right now. I hope they take my brain and learn something from it other than how to drug it up. After I am gone.Happy Happy Happy

[Day]

Started Vimpat about 4 1/2 months ago. My current neurologist started me on 100mg 2x daily. That was along with the 100mg of Dilantin I was taking 2x daily.

I noticed the differences immediately. It was the weirdest thing, just a couple of days after I'd started, I went on a long drive out in the country w/my 2 sisters and Mom. I was joining in the conversations, laughing, joking. I didn't have that 'butterflies in my stomach, I'm gonna throw up if I don't close my eyes' feeling. Didn't have that buzzing feeling throughout my entire body, either. I didn't even know I was having that until it stopped. (It took me quite a while to even realize it.) I was actually relaxed. I was able to actually control my thoughts, to shift my focus from everything else that was goin' on, to then, that moment, being relaxed and having fun. I can't remember the last time I felt that. 2nd grade, maybe? I can't believe that it's actually working!

A few weeks later, I told my neurologist at an appt. and he upped the dosage to the max., 200mg Vimpat 2x daily.(I asked) He also upped the Dilantin to 300mg daily.

Don't get me wrong, Vimpat has it's fair share of side effects, but none that outweigh the benefits (for me). Bloating, gas, yeast, sleepiness, constipation, drooling just a little bit more, all-day heartburn. (I'm about to start taking Michael's Probiotics for all of the stomach issues, as I took a few from a friend a couple of weeks ago, and they were all gone within a few days.)

It's a shame we can't just find one good medicine, and have that one work for everybody. We have to go thru numerous others to find the one that works for us.
It'd be nice if the effects we feel from the first month would just stay that way instead of getting worse or changing into something absolutely unbearable.

[lynnrx52]

Thanks Day for the helpful comments...one of the few positives I've read about Vimpat. I too notice my son has more clarity with the Vimpat (though tempered by some confusion and speech issues from the Zonisamide he also takes). It is also the drug that stopped his seizures.

I appreciate your mentioning about the stomach issues and drooling as my son has those. He is also having tremors in his hands. The drooling and tremors are no big deal. We are having one heck of a time with his stomach though. We take several measures to manage those issues: constipation (severe), acid reflux (severe) and bloating. He takes Protonix every day for the acid reflux and it does a good job. He takes probiotics (in the hopes it will help with the bloating but I'm not sure if its helping much as he is still quite bloated) and Miralax and Amitiza everyday for constipation (the combination works well though not perfect as he still has episodes of having no Bowel Movement for several days in a row at which time we have to do an enema).

My son doesn't communicate well as he is severely impaired so it is so very helpful to get details of other's experiences to help me navigate and manage his situation. Thank you so very much!!! If anyone has any feedback about Zonisamide that would be greatly appreciated as well. Thanks again.

[Nakamova]

Hi lynnrx52 --

I was Zonisamide for a while, and found that it was very hard on my stomach. Aside from acting as an appetite suppressant, it also made my stomach very acidic, so it could be contributing to your son's reflux. It can cause something called metabolic acidosis, so be on the lookout for that.

It also made me a bit foggy -- I couldn't remember vocabulary, and was slower in general. When I switched meds, both the acid stomach and foggy thinking went away.

[lynnrx52]

Oh thank you so much Nakamova. I can't tell you how invaluable these posts have been. Helps me know I'm not imagining things as the docs would sometimes lead me to think (i.e. about the speech issue). Very helpful to know about the acid with Zonisamide. Since we like the Vimpat for it's seizure control I might see if I can get the doc to switch from Zonisamide to something else. What did you switch to?

[Day]

Sorry to hear your son is having such bad stomach issues, lynx.

I'm using Miralax, too. It's working pretty well so far. Also using just about every kind of over-the-counter anti-acid I can find. Suprisingly, Pepto chewables have worked the fastest so far. Maybe not the best, but fastest. Go figure.

I'm gonna look into that Protonix, sounds good. If there's any reason I'd ever come off this Vimpat, that'll be the one. Though, I am losing weight due to not being able to eat from acid reflux.

[lynnrx52]

Day, Thanks for the tip. I'm going to get some pepto chewables and see if that helps the bloating. Sounds like both Zonisamide and Vimpat cause the stomach issues.

[lynnrx52]

Oh and about Protonix. The docs and pharmacists told us all the acid reducers have the mechanism but I can tell you that nexium and others we tried did not work for us in fact seemed to make the reflux worse. My Dad told me every acid reducer he tried wrecked his stomach until the doc prescribed Protonix. That was the only one that worked for him as well. Good luck.

[Nakamova]

Hi lynnrx52,

I ended up switching to Lamictal.

[lynnrx52]

We tried that but it caused a very bad gagging reaction. So much for that. Hope you've had better luck with it.

[KeithH]

Ive been on vimpat for over a month now. The side effect im having is it makes me very tired, and unable to concentrate. Anyone else have that? Another side effect, which is not a bad one is it makes me more calm, but very emotional, lol for example sad things make me want to really cry. No rage though. Keppra made me an angryer person, or more erradic, but i feel keppra made me feel more normal, than the vimpat. I think i have to get use to this one, i am thinking. Let me know you opinions, I have read what everyone has to say about Vimpat, it seem like a good drug, but so far im not sure if its going to really work for me.