Vimpat, a new AED, has anybody else tried it

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I'm through with trying any new drugs. I'm going to stay with what I'm taking and now I'm
coming off Diamox.

Belinda
 

jordanvp

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I'm on vimpat, I have been for over two years now. It replaced trileptal in my AED cocktail, and has far less severe side effects (I felt almost none)
It helped so much with my simple partials, but my body still refuses to be completely seizure free. I wish you the best!
 

lonnie

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I'm still on it and I know my dr. will want to up it next week since my seizures have increased. I still get the worst balance if I don't eat enough with it.

I certainly don't want one that is higher cost than Vimpat.

The biggest problem with having ongoing seizures is not being able to hold AND walk with a newborn grandchild.
 
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My friend who just got taken off Vimpat really had balance problembs. She is on Topamax.That has helped her. I'm on state, and everytime I go and order the pharmacyst and the state is asking why or if I really need this drug. Personally I think it helped me at first with my grand mals. But it has made my other seizures worse.
 

dennis100

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Don't like it. I'm having more T/Cs and afterward I feel postictal for a week. I've been on 400mg for 2 years, my epilepitologist is hesitent to take me off it because it is controlling my complex partials.
 
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I tried it a few years ago really soon after it came out. I don't remember how much I was taking but I had a real issue with the vertigo effects. Few weeks ago I saw my dr and I'm going to give it another shot. I decided since I've already tried everything else I don't know if I gave vimpat enough of a chance. 100mg a day now I'm starting to remember why I gave it up the first time. But I don't like leaving my doctor without changing something to try to help me.
 

Shawnna

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My son has been on Keppra and Lamictal for years. He went as long as 9 months seizure free.

Then in February of this year he had a seizure. Then another in April. And on June 2 he had the scariest seizure I've ever witnessed - thought he would die in my arms. At that time, his neuro increased the Lamictal. Another seizure on June 12 - not as bad as the June 2 - and another increase in Lamictal.

With the June seizures, blood work was done and showed elevated liver enzyme tests. Follow up blood work a week later and the liver enzyme tests were even higher. Neuro reduced Lamictal back to what it was before June 2nd.

Tested for hepatitis - negative.

Now neuro is reducing Lamictal and starting him on Vimpat. Today's the first day of the gradual elimination of the Lamictal and increasing Vimpat to a therapeutic level.

I'm keeping my fingers crossed the Vimpat doesn't cause any side effects and gets him seizure free again.

Will keep you all updated as this unfolds.
Update.... son went 3 months seizure free and we were sooooooooo hopeful he would make it to 6 months so he could have surgery on his shoulders.

But alas we had a huge snow/ice storm and power failure in the middle of January here and I think the stress from that triggered a seizure. (stress is a definite seizure trigger for him and he's wound pretty tight anyway).

So his neurologist increased his Vimpat to 500 mg/day (300 in AM and 200 in PM). He's still taking Keppra as well as a relatively low dose of Lamictal.

We're hopeful still...... he's not had any side affects from Vimpat at all.

It's just so frustrating because his right shoulder is in such bad shape that he can't do much of anything with it or it dislocates. His left should is damaged too but only dislocates when he has a seizure.

January 18th was the last seizure date so now he'll be eligible for shoulder surgery around July 18th if no seizures between now and then.

*fingers crossed*

:?
 

lonnie

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I have been on Vimpat for yars now. My dr. has been really sold on it and says it is what turned the corner on my partial and complex partials. I have hated it. If I don't eat enough food with it an hr. later I am literally falling on my face where I can't stand up at all. I have had worse memory and overall cognitive problms for yrs. These can be related to two brain surgeries though. My seizures have been increasing. I could go into scary details but I won't. I saw my dr. this week sure he would want to increase my dose but after talking about what he calls my body in tolerance to it he thinks we should go back to some of the older ones in new combinations. He is leaving things the same for 2 months to see how I do but also do research on what he wants to do. I can't wait to get off of it. Maybe my balance, memory and cognitive abilities will gt better.
 

SQUIRT

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Hi Aubrey- I was taking Carbortrol and Keppra...and I was having horriable mood swings and was very irritated. I have the partial complex and a couple of weeks ago I was getting really pist off because my hubby wasnt listening to me go firgure and I felt the de ja vu happen and I had a seizure. I know its demented but my husband taped me so he could show the dr exactly what I am doing. It was so hard to see it and it was so heartbreaking to hear my daughter say my name because she did not know what was going on. I went and saw my neuro and he told me to try Vimpat and along with the carbortrol. I am at a real low dosage and he told me to stop to Keppra completly. So that night I did and started the vimpat. The next day in the morning took the vimpat and carb. and later that afternoon I had those rolling spells of seziures. I think may of had 3. had a horriable headache that night. But I am not sure if it was becasue I completly stopped the Keppra. I was on it for over 3 weeks. It is just so random to read your story. But so far I do feel a lot better on this medicine. I go to see the specialist tomorrow and if this doesnt work they r going to see if I am a good candidate for the brain surgery. I really dont want to go down that road.
 
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I too was on Keppra until the rage and memory issues were intolerable. My doc started me on Vimpat. It took some tweaking. Fortunately my doc saw me frequently and worked with me. It was hard and I had some very dark days. It took a while to get it right but for me I needed to be religious about taking it on time avery time, we had to spread it out over the day, and up the dose...after all that, I am happy to say that the 'emotional crash' has gone for the most part if I follow the rules. I have mostly good control if I follow the rules of dose time ,bedtimes and stress avoidence. So far this has been the best yet, memory still sucks but my hubby programs my phone with an alarm so that helps..so do loving reminders...good luck:e:
 

lonnie

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I know this experience is normal for most of you but I have been having more seizures again. One seizure ended up face down a hot tub where I shouldn't have been. Fortunately I was sitting right next to my husband and he was there to pull me up and out. Another couple seizures were out in public.

.Unfortunately I still get embarrassed about them. One was in the car on my way to a dinner out celebration for 35yrs. marriage to my husband.
I know this experience is normal for most of you but I have been having more seizures again. One seizure ended up face down a hot tub where I shouldn't have been. Fortunately I was sitting right next to my husband and he was there to pull me up and out. Another couple seizures were out in public.

.Unfortunately I still get embarrassed about them. One was in the car on my way to a dinner out celebration for 35yrs. marriage to my husband.

. My neurologist would like to raise my Vimpat more but he now agrees with me that Vimpat is toxic to me. He still has me on it though since even thought it makes me sick,and lots of other things listed below, it has helped with the non-complex seizures some. He told me now that something new anticonvustsant is coming out .

If a new one can take away my seizures with not always loosing words, dropping sentences in the middle and have to stand there so frustrated poor balance to actually falling on my face then this new one might be wonderful. I can imagine how expensive a new drug will be. That is a hardship on me. I had finally been given a coupon which has helped 45 percent of the co-payment on my Vimpat each month and will still last up until the year after it was started. Have to go now Lonnie
 
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Aloha Lonnie, I understand how you feel, I have struggled with ebarrassment although my friends and family have helped a lot. I just came back from vacation with my husband and we stayed with our daughter and son in law on the way back; with all the time changes and travel I had a seizure at her house and woke up in the dog's bed...the dog was a bit confused but then again so was I. As for memory issues my doctor explained that the seizures themselves play a big role as well as the meds so the upside is there are no repeats on tv for me, every one is a new show! :woot:
 

SQUIRT

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I have been on carbortrol and lamictal. They had to switch me back and forth because I got prego. So my body has a lot of changes and it seems to me I have not been seizure free for four years thats when I was diagnosed. I have simple complex seizures...I also have those auras. A few months ago they put me on keppra and talk about mood swings. after that whole ordeal they kept me on carbortrol 600mg and started me on vimpat 50mg i been feeling great on it! No auras nothing. But yesterday the whole family is sick so I decided to take a vitamin zinc 50mg I took it with my meds all at the same time. 5hrs later felt an aura and had a sezuire. That is the only thing I can think of that would cause me to have a sezuire didnt last long. I know vimpat is a new drug and it usually takes the body 4hrs to absorb. I know some meds you can not take with certain viatmins cuz it could intefere. Any thoughts?
 
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i tried it and it's not a formulary drug for my insurance, my neuro gave me a few bottles to sample, it seemed to help slow the seizures but didn't totally control them. Since it isn't on the list i can't afford the meds. Hopefully theres something else out there, i already take 2000mgs of keppra.
 

lonnie

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my doc. finally he would like to raise it but now realizes how toxic it for me. He lowered the dose but does not want to take me off of since he thinks he has seen it helping. I have been on it for yrs. now.
 

Shawnna

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My son has been on Keppra and Lamictal for years. He went as long as 9 months seizure free.

Then in February of this year he had a seizure. Then another in April. And on June 2 he had the scariest seizure I've ever witnessed - thought he would die in my arms. At that time, his neurologist increased the Lamictal. Another seizure on June 12 - not as bad as the June 2 - and another increase in Lamictal.

With the June seizures, blood work was done and showed elevated liver enzyme tests. Follow up blood work a week later and the liver enzyme tests were even higher. neurologist reduced Lamictal back to what it was before June 2nd.

Tested for hepatitis - negative.

Now neurologist is reducing Lamictal and starting him on Vimpat. Today's the first day of the gradual elimination of the Lamictal and increasing Vimpat to a therapeutic level.

I'm keeping my fingers crossed the Vimpat doesn't cause any side effects and gets him seizure free again.

Will keep you all updated as this unfolds.


Update.... son went 3 months seizure free and we were sooooooooo hopeful he would make it to 6 months so he could have surgery on his shoulders.

But alas we had a huge snow/ice storm and power failure in the middle of January here and I think the stress from that triggered a seizure. (stress is a definite seizure trigger for him and he's wound pretty tight anyway).

So his neurologist increased his Vimpat to 500 mg/day (300 in AM and 200 in PM). He's still taking Keppra as well as a relatively low dose of Lamictal.

We're hopeful still...... he's not had any side affects from Vimpat at all.

It's just so frustrating because his right shoulder is in such bad shape that he can't do much of anything with it or it dislocates. His left should is damaged too but only dislocates when he has a seizure.

January 18th was the last seizure date so now he'll be eligible for shoulder surgery around July 18th if no seizures between now and then.

*fingers crossed*

:?
It's been quite a while since I visited here and I've got lots of good news to share!

My son's last seizure was Apr 15, 2012. After that one, his neurologist added Depakote to his regime. With that added, he's taking Keppra, Lamictal, Vimpat and Depakote.

And no seizures in 8 months!

On October 18, he had surgery to fix his left shoulder. And assuming he goes seizure free for six more months, he'll have surgery to fix his right shoulder.

*fingers crossed* we stay seizure free!
 

libbyl

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stay away if you can----

vimpat had bad side effects for me-----balance problems,memory,just a few----can;t believe it helped anyone------wow what a reaction.best of luck.
 

lonnie

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I have been on Vimpat a long time now. I hate it. Not only am I still having seizures but the side effects are terribly hard to live with. It mixes bad with my other meds. If I don't take it near a substancial meal which for me and my afternoon dose becomes very difficult I end up having spells where my legs go mush on me and I collape to the floor unless I can grasp on to something while I am going down. Even if it is with a substancial meal it does the same thing to be mixed with some of my other meds. Once I collapsed to the ground without my husband here and when he came in I was trying to crawl to the couch but was having a great deal of problems with my balance to even crawl.It also effects my balance and co-ordination in general. I have to use a cane now and if I am going to walk outside I need a walker. Sometimes my vision is blurry or double. I could go on. I guess these things would not bother me as much if it was working and taking away my seizures. My Neurologist has lowered the dose some admiting that for me it is toxic but it is the last new thing he is willing to try now because of the damage my brain surgery did. Sorry to be so negative but everyone should know it is not a miracle drug for everyone. Merry Christmas. Lonnie
 
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