Has anyone else taken Vimpat? URGH!!

[TexasMommy]

I took my first dosage in the hospital to wait to see if I had an allergic reaction and I didn't. I was sent home and I took it for the first time last night and I had a seizure soon after. OMG! THAT WAS AWFUL! He said it was suppose to magnify my feelings, but geez! I usually get what I thought before hand was very dizzy, but whoo, I was wrong. I was so dizzy I feel to the ground and guys I couldn't even crawl right. I was so sick to my stomach. My body ached, but everything was intense! The pharmacist said it would ware off, but dang, how long is that gonna take it? Is it really going to take a long time to ware off? Has anyone else taken Vimpat? Please help!

[Nakamova]

I hope you feel better soon. Is there any way you could start on a lower dose?
There are a few folks here at CWE on Vimpat. Here's a recent thread:

Vimpat and disruption of sleep (REALLY vivid dreams/nightmares)

[Endless]

Texasmommy,

That sounds absolutely awful. I haven't taken Vimpat, so I can't advise on that. I did have an achy muscles/painful joints/headache/exhausted/dizzy/rash reaction to Trileptal. I felt like I'd been hit by a truck. At first I thought it was a really bad flu but my PCP & pharmacist said it was a reaction to the Trileptal. It didn't go away after about 3 weeks, so my doc lowered the Trileptal dose. Now I'm just a little achy and dizzy and have a small rash and I can handle all that, but the seizures aren't under control. Ugh.

Your post says you talked to your pharmacist. Did you call your doctor? You might want your doc to know what's going on.

[tkopi]

I take Vimpat and my doctor started me out on 50mg dosage for a week and then upped another to 100mg the next. He wanted to take me to 200mg but I got dizzy at 150mg so he kept me at 100mg. I still get dizzy every once in awhile in the morning but only if I have a pretty small breakfast so I make sure I have a descent sized breakfast before hand.
Definetly let your Dr. know what's going on.

[lynnrx52]

Hello TexasMommy, I wonder how you are doing now. Did you contact your doctor? I hope they started you on a low dose. I believe Vimpat is a med that needs to be titrated into your system. My son is 31 and was carefully titrated onto it. He is currently on 100 mgs twice per day. He was on 150 mgs twice/day but he was startling awake at night and having such severe digestive issues we reduced it. I will say that the vimpat really works well to stop seizures in combination with other drugs but it is still causing severe digestive issues and I'm worried about that.

After complete success with Depakote for most of his life it became toxic and ineffective later on. He has been on Vimpat now for 3 1/2 months - this along with a very small amount of trileptal and 100 mgs of zonagran twice per day. With combinations its somewhat hard to pinpoint which drug or drug interactions are causing which side effects

Don't be afraid to bug the docs. It can be quite a journey but everyone's different and if you keep at it sooner or later you'll find the right doses and drugs with side effects you can live with. My best to you. I am very much interested in hearing from people about side effects experienced from vimpat and zonisamide and even trileptal. Keep up the chat!

[C0urt]

my doc has prescribed every one I have heard vimpat. I tried taking it. the side efferects where not worth it.

[TexasMommy]

I am indeed doing better. The side effects are starting to ware off and it is actually starting to help! The seizures don't last nearly as long and the aftermath is getting much better. I tried to talk to my doctor and I couldn't see her until 6/22 so we will see. Thanks for the advice!

[lynnrx52]

C0urt I am sorry to hear the vimpat didn't work for you. What are you on now? May I ask what side effects you were having from the Vimpat?

[huskymom]

I just added Vimpat to my daily cocktail last month. It did take about a week to get used to it. I do still occasionally get dizzy, but not like before! Hang in there!!

[knothing]

vimpat can be a wild ride at times. I take 400mg a day with 3000mg Keppra. I have learned not to miss meals and that helps. I have the occasional dizzy spell but I have adapted. Hang in there!

[C0urt]

C0urt I am sorry to hear the vimpat didn't work for you. What are you on now? May I ask what side effects you were having from the Vimpat?

Felt sick, anger management. dizzy. sleepy. made writing tricky for a bit.

[Aussie69]

Have been on Vimpat for 3 months now and still have not got use to it. For me it's side effects are dizziness, balance problems and this is no joke - auras, which will end up as a seizure. Most of my seizures up until I first took Vimpat were nocturnal. This is no more as they are all during the day. Usually occur between 3-7 hours after morning dosage.
I suffer visual triggers, (occipital type epilepsy), and this happens much more easily. Triggers include bright lights and certain colours. Now just looking in a different direction will cause an aura.
Looking through the replies I must admit I don't each much in the mornings. Cup of tea.

[lynnrx52]

Hello Aussie69. Sorry to hear you are struggling on Vimpat. It's amazing how everyone has different side effects. From my experience i would expect the dizziness to go away eventually. It doesn't surprise me that your seizures have changed. I noticed this when my son first started taking it too but the seizures stopped altogether after several months. My son is having severe skin and bowel issues related to Vimpat. It's been 7 months now and we may have to switch due to those issues. A shame though because mentally he is doing very well, better than on most of his seizure meds and the seizures are gone. It's a real puzzle eh?

[tkopi]

I'm glad to hear lynnrx52 that your sons seizures have stopped altogetther but I'm being effected like ausie69, I've been taking it now for several months now and I still get dizzie sometimes I have to sit down for awhile, and I'm only on 200mg. a day. Got to go see Dr about it Because I'm just tired of it.

[lynnrx52]

tkopi have your seizures stopped? Just so you know we started (after titration from 50mgs 2x/day on up) on 150mgs 2x/day. We reduced it due to skin, stomach and bowel side effects and he is now on 100mgs 2x/day. It's still working re: seizure control. You might ask your doc about reducing the dose. If you can get away with it and the drug is successful otherwise sometimes a reduced dose works better. My son is also on 100mg Zonegran 2x/day and a teeny tiny bit of Trileptal which we are getting off of.

[RainbowBrite]

Vimpat gave me some terrible vertigo and dizziness that ended up in vomiting and I eventually had to stop taking it for good. It was an awful feeling

[Ann T.]

TX Mommy:

I've had a lot of the same symptoms as many who take Vimpat & who have posted a response. Vertigo, dizziness, & queasiness are the worst side effects, but if I take it w/ a meal, I'm fine. I could ask my neurologist M.D. to take me off it, but Vimpat is my only hope...take care, TX Mommy.

[drfrap]

My wife has take them all in about every combination known to try to be seizure free. Our latest variation (started this Monday) is 100 mg Vimpat 3 times per day. 200 mg Zonergan once a day and .5 clonazepam 3 times per day. Our goal is to eliminate seizures and maintain a "quality of life." What a tight rope walk.

She has experienced various typr of seizures since 1984 and mono therapies have worked well for years then just suddenly fail. In my opinion Epileptology is a very mystical science with little if any certanties. It seams to be hit and miss trying to find the "silver bullet."

My recommendation for anyone on seizure meds is to build a matrix (I used excel) listing the various types of seizures and the various side effects. Carefully plot all seizures and side effects experienced from each medication. This will be an invaluable addition to your seizure diary/log and will be most beneficial in selecting a medicine protocol that gives you the best contraol with least side effects.

[lynnrx52]

My wife has take them all in about every combination known to try to be seizure free. Our latest variation (started this Monday) is 100 mg Vimpat 3 times per day. 200 mg Zonergan once a day and .5 clonazepam 3 times per day. Our goal is to eliminate seizures and maintain a "quality of life." What a tight rope walk.

She has experienced various typr of seizures since 1984 and mono therapies have worked well for years then just suddenly fail. In my opinion Epileptology is a very mystical science with little if any certanties. It seams to be hit and miss trying to find the "silver bullet."

My recommendation for anyone on seizure meds is to build a matrix (I used excel) listing the various types of seizures and the various side effects. Carefully plot all seizures and side effects experienced from each medication. This will be an invaluable addition to your seizure diary/log and will be most beneficial in selecting a medicine protocol that gives you the best contraol with least side effects.

Good idea Drfrap. It's a puzzle for sure and unique to each individual. I have been thorough charting side effects and seizures for my son but unfortunately the Docs have seemed, well lets say less than enthusiastic about hearing of my observations. We have a brand new doc though (since I complained) whom we've seen once. So far so good. I hope it works out and that she'll listen to us.

It's important to stick to your inclinations about what meds you or your loved ones are on. NEVER FORGET, you are the expert on your or your loved ones situation. And never stop looking for a better answer if you are suffering.

My son is now on 100mg Vimpat 2X/day and 100mg Zonigran 2X/day. No seizures! He continues to have skin and bowel trouble which takes some management but improving with diligence and rigor. He does have trouble sleeping and awakes with a startle frequently (Possible nightmares). I think that's the Zonigran.

[drfrap]

We went through the same discouraging scenarios time and time again with doctors who started my off at full dosage, rather than titrating. Playing hit or miss with change after change. I have no patience with doctors are are not compassionate with my wife. I will drop them like a hot potato.

Last year we attended an event called "Take Charge." It was hosted by Dr. Amir Arain at Vanderbilt University Medical Center. His brief seminar encouraged patients to take charge of their treatment/recovery. We spoke with him during the break and he agreed to become my wife's epileptologist. We have been very happy with him. He is compassionate, caring and he LISTENS. She has improved greatly. Find a good, caring Dr. and "take charge."

She had been a patient at the same clinic a couple of years before and was treated by a doctor who listened to nobody. It was his way or the highway so we chose the highway.