New Drug- Vimpat

[Blackout]

I have been given a two week starter kit and a bottle of samples of Vimpat, the third anti-seizure med I will be taking along with Keppra, and Tegratol. Does anyone take this new med and if so how are the side effects? I hear headaches are prevalent.

I have never taken three anti-seizure meds at once before and I'm not sure if it's worth the side effects it may have on me to try to control my seizures. I have been on many of the drugs out there and none have controlled my seizures and I have had about 2 seizures a week on all of them, more if I don't sleep well.

I have to function well as I teach a couple grad classes and write my dissertation so a balance has to be found between seizure control and a high level of functional cognitive ability.

[Zoofemme]

Hi Blackout...I take 3 meds currently: topamax, lamictal and trileptal. The topamax was added about a month ago, initially for migraines but also in hopes of eventually replacing one of the other meds. That went out the window when I had a seizure the other day and the Lamictal was increased (this was the one the dr talked about dropping). I have always experienced side-effects when first starting meds but most fade away (like the headaches). Probably the only one that sticks the most is drowsiness and lethargy...for me that means I miss out on a lot of TV show endings and I go to bed early

[knothing]

I take Keppra and Vimpat. When Vimpat was added I did not experience headaches. My side effects were hands shaking, missing words while typing/talking, and being a little bit hyper. The missing words part may not be related to Vimpat, it may come from my temporal lobe epilepsy (Temporal Lobe Epilepsy). I am sure you have heard that all drugs affect everyone differently. But I would say the sleep factor is one that most people share. Everyone is different with the amount of sleep required.

[appsandsuch]

I started Vimpat at the beginning of this year. I've tried a boatload of anti-epileptic drugs prior to this, and was on Carbatrol and low doses of Zonegran and Klonopin when I began Vimpat. I went super duper slow with it- started with 25 mg./day and moved up weekly by the same amount. I would say that once I reached 75 mg, I saw some differences- my activity came to a complete stop for about a month, and I never experienced any side effects. Normally I would say that a month is too short to tell in my case, but even though my serious seizure activity can be spread out, I have a ton of tiny simple partial seizures during the day every day these days- almost unrecognizable activity, but I've come to recognize when my brain is misfiring. It's like having auras a few times a day, but they rarely result in anything else. And that activity disappeared for that month.

So, I had that honeymoon phase with it, and then I had a harsh Complex Partial (which I rarely ever have,) that knocked me on my ass for a week or so- I had severe interictal depression, something I've never felt before. I can't say this had anything to do with the drug, but it certainly was bizarre, and there weren't a lot of changing variables. Perhaps this would have been a grand mal without it, who knows? Maybe that drug was actually helping me. I still don't have answers for that.

After that complex partial seizures, the daily activity returned, but (knock on wood), it's been taken down a notch, is more than manageable (not that it ever wasn't, but it's less of an annoyance now an more just...there), and I haven't had any other activity except those auras. I weaned off of the Zonegran recently, so I'm currently on a relatively high dose of Carbatrol (been on that for YEARS), 250 mg of Vimpat per day, and a tiny dose of Klonopin as well.

Again, I can't say that I've noticed any side effects from the Vimpat, which is nice because, in my adult life, side effects from drugs have been hitting me pretty hard, as opposed to when I was a kid and these drugs didn't seem to impose any side effects upon me at all.

You mention that functional cognitive ability is key because of your studies. I definitely feel like my brain isn't what it used to be, especially in the verbal communication arena (losing words constantly), and I'm only 27, but I suspect that's a mix of the temporal lobe epilepsy and the side effects of Zonegran (mostly the side effects of Zonegran) and not the Vimpat. I can't say for sure, but I'm hoping things improve now that I'm off Zonegran. Who knows? Maybe I'm just not as smart as I thought I was and I'm trying to blame the drugs

Obviously it's hard to tell how each person is going to react to a drug, but I guess I'm hoping that my story will help you not be too nervous about trying Vimpat. It's been a great drug for many people. It's still too early for me to tell whether or not it's the "miracle" drug for me, but I don't have any complaints. My suggestion would be to go slowly with it, if you have that luxury- that might help any potential side effects.

Good luck! (with both the medicine and your dissertation.)

[Jen]

My brother started taking it. He lasted quite a while without seizure before he died. I can't say how it will work with you. I'd like to think that it was a good drug with very little side effects. You really need to see how it works with you. If you are still having seizures, DON'T risk it. Tell your doctor. It's a very new drug and the kinks are still being worked out.

[carlos.fonke]

My brother started taking it. He lasted quite a while without seizure before he died. I can't say how it will work with you. I'd like to think that it was a good drug with very little side effects. You really need to see how it works with you. If you are still having seizures, DON'T risk it. Tell your doctor. It's a very new drug and the kinks are still being worked out.

Thanks for this post. I was thinking of changing from the tried and true (for me) Carbatrol. Think I will stick with it a while longer.

[knothing]

New drugs that get initial approval go through a series of evaluations over years to maintain approval. Also on the initial release of Vimpat it was noted for use in those 17 yrs or older. Any new drug is a risk including what is tried and true to you (Carbatol). The real down side for Epilepsy is having no real answer. We all have to go out on that limb and hope the branch holds up.

I use Vimpat but in no way condone or condemn it's usage. Everyone is different.

[carlos.fonke]

Any new drug is a risk including what is tried and true to you (Carbatol). .. Everyone is different.

Of course. In this case, I think we're all the same: we'd ditch every one of them today if we could. I'll keep Vimpat in mind.

[Meetz1064]

and how are you today, Carlos?

Vimpat's only been around on the market for about a year or so, maybe not even that--I'd have to go back and check, my memory sucks thanks to that lovely thing we both have--E.

There are several others on here who have taken Vimpat, both with good and bad luck. Hopefully, they will stop by as well, and chime in, too.

However, I am on FOUR types of E meds now, and under really good control. My seizures though, are nocturnal, and brought on by high stress, missed meds, and lack of sleep (over long periods of time). I have not had a t/c in close to 7 years now (knock on wood). I have noticed that I am having a few little myoclonic twitches at night, so my Klonopin will probably be increased at my next appointment.

Yes, some days the combination of the 4 meds makes me tired--but only if I decide to not get enough sleep the night before. Yes, I take Topomax, and it DOES help with my headaches SOMEWHAT, and also contributes to the seizure control. Magnesium does a better job of helping with my migraines, though.

Meds are not an exact science unfortunately. I wish they were. I substitute teach, and am also a writer, so like you, I MUST have the cognitive abilities handy at all times. There are days that I will admit that I don't--I can't find words to speak with, or write with.......and neither my neurologist nor I can pinpoint why. THAT is a pain in the arse.

I wish you the very best of luck.

Meetz

[carlos.fonke]

Meetz, thank you. I'm well today. I'm here almost an entire week before I'm introduced to a mod. This slowness is probably a pharmacologically induced cognitive deficit.

I have to closely monitor sleep as well. Stress, caffeine, alcohol. Sometimes it seems burdensome, but even without E it's helpful in maintaining health.

The reason I'm being a bit dismissive about Vimpat - for the moment - is purely personal. I don't mean to discourage anyone else who may be taking it or is interested in doing so.

My next appointment is months away and hopefully it doesn't get moved up - if you know what I mean. I had already signed up at the Vimpat site so I will not forget when the time comes later this year. I'm just not in a position to even consider changing at the moment.

The drug is designed for my type of seizures, so of course I am interested.

[dfwtexas]

On my last neurologist appointment, he had to up my Keppra level again. I brought up Vimpat as Jordan's posts about it seemed positive. My neurologist said if I needed more meds aftering upping, he would add the Vimpat. He said he is having very good luck both with seizure control and lack of side effects with his other Keppra patients.
Some times it is confusing...are we experiencing problems from aftermath of seizures or side effects from the drugs? I say it's like the chicken and the egg..which came first? LOL
Jenn

[Aubrey]

My experience with Vimpat is mostly like appsandsuch. For me it is an add-on to Lamictal and Zonegran. I was really dizzy when I was first taking it. Now I am taking 50mg/2x daily. It brought down my level of complex partials, so my doctor increased the dose, and the complex partials came back. I also had missing words and strange memory gaps, but what medication caused them I am not sure, and they seem to be becoming more manageable. I take Lamictal 600mg, Zonegran 300mg, and Vimpat 100mg per day. They haven't found the magic cocktail for me yet, though. Best of luck.

[Jen]

My experience with Vimpat is mostly like appsandsuch. For me it is an add-on to Lamictal and Zonegran. I was really dizzy when I was first taking it. Now I am taking 50mg/2x daily. It brought down my level of complex partials, so my doctor increased the dose, and the complex partials came back. I also had missing words and strange memory gaps, but what medication caused them I am not sure, and they seem to be becoming more manageable. I take Lamictal 600mg, Zonegran 300mg, and Vimpat 100mg per day. They haven't found the magic cocktail for me yet, though. Best of luck.

From what I know the main reason for the drug is to prevent the onset of seizures, such as partials etc and to work with other medicines to help prevent the whole thing. I have heard great things, as I said. Its good to have something that helps both rather than just one side of seizures.

[Junebug]

First off if you don't have good insurance, then don't risk it. It is very expensive! If you don't have insurance at all and you do want to try it then ask your dr about the patient savings program through the drug mauf. UCB. They can set you up with a 6 month supply.

I have been on Vimpat since it came out last year and it has been better for me than Topamax was doing but it makes me really tired. Headaches all the time in the morning, like as if I had slept in the wrong position all night. My head, neck and eyes all hurt so I'll take an Excedrin Extra Strength w/ Caffiene if I'm not feeling better after 3 or 4 hrs. That usually wakes me up and gets me feeling a little better. I don't like to do it often but I has to be done so I can function and not have a seizure.

I'm also on Keppra XR and that makes me really extremely irritable so I take 100mg Vit B6 2x's a day and that really helps calm me down and not kick holes in the wall when the phone co. turns my phone off for no good reason. LOL!

[behlen]

Since I started having seizures two years ago i have not sleep more than four to five hours a night. I take lamictal and now venpat. I took lunesta and now ambian. Nothing is helping. Any suggestions out there. I recently did a week long sleep study to see if I was a candidate for temporal lobe surgery. All of my seizures that week were in my sleep. Wondering if I am having them in my sleep and that is waking me up and not letting me sleep or what. Anyone have any experience or had the surgery. I read alot about temporal lobe surgery and not really sure if I want to do this, side effects kinda of scary

[Nakamova]

Hi behlen,

I know Lamictal messed with my sleep for about 2 or 3 months and then that side effect went away. Maybe that will happen for you. Have you tried any non-Rx stuff for sleep, like progressive relaxation or special music designed to encourage sleep (i.e. Delta Sleep System)?

CWE member Cint has had the temporal lobe surgery. You could PM her for more info.