Vimpat, a new AED, has anybody else tried it

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That's one of the main things I remember about Keppra, Keith, is that it made me really moody. I was constantly pissed off at everything and everyone. In fact, I tried to not even talk to anyone for fear of offending them.

For the first couple of months on Vimpat I was very sleepy during the day. Now, at 4-5 months, I've noticed that I get really sleepy all of a sudden right around every 4 hours. At noon, at 4pm, then around 8-9pm, around 12, then 3am. Strangely, if I don't go to bed at 12, I pretty much know I'm gonna be awake until the wee morning hours, because I'm not really tired in-between those times. I try not to stay up past 12 now. Sometimes 8-9.
Does this happen with anyone else?
 

lynnrx52

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Vimpat

:soap:Keith H, I'm wondering how much Vimpat you are on and what else you are taking for seizures. Both of those things could impact the side effects. The Vimpat dosage is usually titrated. I imagine that helps mitigate some of the side effects. You have only been on it a month. I would give it 3 to 6 months if the side effects aren't bad enough to make you change.

Tiredness is pretty common with most seizure meds in the beginning but usually goes away with time. From my research and experience with my son it actually seems to give him more clarity instead of the inability to concentrate and does not make him tired but I think it did in the beginning like with everything else we've tried.

Funny that you mentioned being emotional though. My son never cries, even when he was a baby (unless in severe pain) but lately he has been coming to tears over the strangest things...he transitions between laughter and tears in a strange way over nothing. I thought it was the Zonisamide but maybe it's the Vimpat. (?) In my head I make a list of the bad effects of drugs and then one of the good and so far most of the bad is manageable compared to the benefits (it stopped his seizures when many other drugs failed and it helps instead of hinders his cognitive ability).

Keep us posted I'll be curious to see how you are doing on the Vimpat over time if you stay on it. Let me know what else you are taking OK? Thanks
 

SevenC

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That's one of the main things I remember about Keppra, Keith, is that it made me really moody. I was constantly pissed off at everything and everyone. In fact, I tried to not even talk to anyone for fear of offending them.

For the first couple of months on Vimpat I was very sleepy during the day. Now, at 4-5 months, I've noticed that I get really sleepy all of a sudden right around every 4 hours. At noon, at 4pm, then around 8-9pm, around 12, then 3am. Strangely, if I don't go to bed at 12, I pretty much know I'm gonna be awake until the wee morning hours, because I'm not really tired in-between those times. I try not to stay up past 12 now. Sometimes 8-9.
Does this happen with anyone else?
I am so glad you posted this! Me too!!!!! I'm not glad we're having this reaction, but it's nice to not feel alone. I just started Vimpat and we are weaning me off the depakote and replacing it with Vimpat. We may add Lamicatal or something else later. (I told Momofthree in another thread, I have a hormone disorder that makes the seizures worse, so we are trying to find medications that don't aggravate my hormones so badly.) I am so sleepy!!!! I'm talking narcoleptic sleepy. I can hardly function during the day. I took like 4 naps yesterday. I'm glad I was off work yesterday and was able to do this. I am hoping once I'm off the depakote, I can adjust. Right now it's terrible because I feel like a zombie.
 

lynnrx52

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OK, now that I think of it my son may be having a similar experience. He does get extremely tired every so often during the day for a short period of time - like practically passing out - but bounces right up in like 10 minutes. I always thought it was because he gets up at 4am every morning like clock work and doesn't sleep very well when he does sleep (which I figure is drug related as well, perhaps the Zonisamide). His switch was from Depakote to Vimpat like you. What else are you on besides Vimpat? It is usually not taken alone.

Good luck with the transition!!!! Give it a little time.
 

SevenC

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We're not sure yet, we're just getting me off the depakote and onto the vimpat, then we'll add something else. I have pcos, which is a female condition, your son won't have to worry about. But my hormones make the seizures worse, so we'll be looking at something that may not aggravate the seizures as much.
I know how he feels though, with the crashing/sleeping/crashing!
I hope he gets his straightened out.

I mention this to every parent I talk to on here, but does he have an IAP or medical 504 plan at school? ( If he is in school already) Children with epilepsy qualify for special ed because of their health condition. He'd be in regular class during the day but during those lengthy standardized tests, he could get extended time and repeated directions, which anyone on all this seizure medication could use. A lot of children with epilepsy see their grades fall and it's not their fault!
 

lynnrx52

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Vimpat etc.

StevenC my son is 32 years old. He had a massive brain hemorrhage when a baby so he has a lot of brain damage, thus the seizures. He'll need 24hr care for the rest of his life. He's quite mobile but is like a 4 year old. He's severely delayed, blind, has mild Cerebral Palsy, Hydrocephalus and lots of medical complications due to the hemorrhage. He is also in remission from stage 3 testicular cancer (Aren't we the lucky ones? It's a completely random form of cancer that has nothing to do with all his other issues and is not hereditary. Go figure.) He's had so many surgeries I've lost count. He's done with school but does go to a day program now. Despite all that he is a hoot and a very happy, pleasant person. Amazing what the brain and body can endure.

Your situation seems complicated for sure. Hormone problems plus seizures must give your docs a run for their money. I wish you all the best working it out. I'll be curious to find out what additional med you add after you're off the Depakote.

It would be nice if he would just sleep at night instead of napping during the day. Ha!:ponder:
 

KeithH

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Thanks everyone for their reply to my posts, its been about 2 months since i started the vimpat i started out at 100mg now im on 150mg twice a day. I also am on lamictal 200mg a day. So far i am not really not sure if its working for me. ive had 2 seizures a few months apart. when i was on keppra i had it almost 2 years to 3 years apart. I know that there is good and bad with the meds like im an angery person when im on keppra but a calm and happy person when im on the vimpat. antoher good is i dont black out from my seizures (sometimes i think that really sucks because i see how it happens). Over all the keppra to me held better for me, although when i do have a seizure i black out. This is just my experience with the drug. I know everyone will have a different reaction because of the type of seizurs they have, but i hope it help you.
 

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Hey, hope your getting along ok on the Vimpat, Keith. One positive is that whatever side effects your having now, you may not be having in a few weeks.
The side effects of this stuff are constantly changing.

I'm not quite sure how to say this, but I think the Vimpat is somehow making the color of my hair come back. I've been on a lot of meds for seizures, and my hair's been going white since I was 11. I had been noticing a distinct change over the last several weeks( of the huge white spot on top of my head getting smaller), but figured it was probably wishful thinking. Yesterday, though, my hairdresser noticed, without me even saying anything.
The normal color is slowly starting to improve too, from the black n white and something between gray and brown, to the regular brown w/natural highlights. :yippee:

It can't be because of coming off an RX, because my doc added the Vimpat, he didn't take me off anything.
This has gotta be one of the best side effects I've come across yet.
 
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I just registered here today and started Vimpat a couple weeks ago. Today's my first day with 200mg in the morn and at night. While doing this, I was coming off of Keppra that was contributing to many unwanted suicidal thoughts and irritability. Hated it, but Dilantin is still the worst.

When I was told that Vimpat was somehow 'related' to how Dilantin works, I was really scared. So far, no issues. I'll be taking the Vimpat by itself next week, even though it -- apparently -- is used with something else in most cases.
 

Nakamova

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Vimpat's track record is as an adjunct med -- i.e used with something else -- only because that's the way AEDs have to enter the market. It can't be test for monotherapy because that would mean that half the test population would be on a placebo -- not really an option for folks with seizure disorders.

I hope the Vimpat works for you. Keep us posted!
 

DVinSC

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My daughter just started Vimpat as a second med to Trileptal but she had to start on a really low dosage because it seemed to cause her to be more aggitated. It is so wonderful to read your comments because she has cerebral palsy and can't tell me when something is really bothering her. I do watch her expressions, etc. though. She walks around but doesn't say many words. She has grand mal cluster seiz's usually during the night while she is sleeping. I hope that Vimpat will work for her too.
 

lonnie

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My major side effect from Vimpat is that if I don't have a full stomach when I take it within an hour I will be unbalanced enough I will start to fall on my face. I am on Lamictal too and was just put on neurontin for severe nerve damage. I have found that if I take the Vimpat and neurontin too close together it gives me the same side effect. Has anyone else experienced this side effect with these drugs?
 

momof3boys

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I hope everyone who has is Vimpat has no bad side effects. I was on it for a few weeks and had to get off due to the terriable mood swings, and I got to the point where I didnt care about anything at all. Depressed alot. The minute I got off of that, I saw a huge improvement in my mood. I tried the Lamictal too, but had a terriable case of what I thought was acne, but then went into more like sores on my chin area. Then came the swollen glands, my Primary care dr said I was having an allergic reaction to it. So I was taken off.

Im on Keppra XR now. :)
 
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I am on Vimpat 100 am 100pm. I can not go higher because it just knocks me out. I was on 200 and 200 but then got off of it. My siezures are much more controled on it. But I am also on Keppra, lorazepam, zonegran. It can be tough. It's considered a narcotic the way it works itself into your brain. Have you looked on Vimpat .com? It just tires me out.
 
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I hope everyone who has is Vimpat has no bad side effects. I was on it for a few weeks and had to get off due to the terriable mood swings, and I got to the point where I didnt care about anything at all. Depressed alot. The minute I got off of that, I saw a huge improvement in my mood. I tried the Lamictal too, but had a terriable case of what I thought was acne, but then went into more like sores on my chin area. Then came the swollen glands, my Primary care dr said I was having an allergic reaction to it. So I was taken off.

Im on Keppra XR now. :)
Since you so long on keppra,did you ever had flue like symptoms but in a wierd way?

For example..At night you nose start running in the morning you wake up with a running nose and sometimes sore throat but after an hour everything is fine that it begins again in the evening like a cycle.

When i was on generic teva keppra i din't have this but had other problems when i swtiched to the brand its like ie became sick and its been like this for 3 months.The wierd thing is that it passes away after i wake up till the night again.Sounds familar?

Did keppra caused you high blood pressure ever?

did you feel like one of your arms is weak and got a wierd feeling?

I never had this before keppra even when i wasn't on aed and kept having seizures every day but now i feel it and the wierd thing is that when i don't think about it i don't feel it but when i notice it i keep feeling it the whole day!.
 
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Not for me. I have to be on an anti-depressant with Keppra . Or I get really really depressed. The reason I got off vimpat before is it made me really tired. Now that I have agreed to go back on it I will not go over 100mlg am and 100pm. It makes me way to tired. I don't think I have had flu like symptoms. I have been on this for about 10 years.
 

SevenC

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I've been real hesitant with the Vimpat because I remember how much it gave momofthreeboys.

So far no mood changes, but I have a feeling I'm going to have to switch, again.

Every time I take it (200 mg 2X daily), my lips, mouth and tongue go completely numb. That can't a good thing. I'm incredibly sleepy all the time too, which is normal.

Also---and this is crazy but I'm putting it out there--- my blood sugar has been low.

In addition, last time I went to the doctor, they couldn't find my heart beat. My blood pressure is extremely low.
 
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Welcome Seven. I have one boy with epilepsy and I am single. It's tough. I am not going to go on more than what I am on now. My epileptologist knows that that is know way to live. A little extra tired is ok. But when I was on 200 and 200 I slept all day and did not get enough exercise. Now I am starting all over again.The numbness I did not experiement.
 

lonnie

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I hope you do well on it. It has helped me. with my partial onset seizures. We have played around with the dose. I have problems with side effects. Good luck. All my best to you. Looking forward to hearing more from you on how you do.

Please excuse me for adding more of a message in your post.I don't know how to just make a separate new post to ask a question without starting a new thread.

I received a message on my e-mail saying

(momof3boys has just replied to a thread you have subscribed to entitled - Vimpat, a new AED, has anybody else tried it) - in the Lemonade Stand forum of Epilepsy Forum.

I must have hit a wrong button or something. I think now it told me I have been removed from that thread. I don't see that thread, my post or that response on that thread. I don't understand a lot of things. I don't understand what is going on. Can someone get my post and that response back for me.?
 

lonnie

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OK somehow now I see myself back on the thread. Some how I was mixed up.
While I"m on I would like to up date a situation I have. I don't know if it is Vimpat or the lamictal and the neurontin they just recently put me on or a combination.
. My depression has increased terribly recently. I am seeing my psychiatrist tomorrow. Just recently they took me off of the amytipline I have been on for years. My neurologist just told me it was fine with him if my psychiatrist wanted to put me back on it. I'm hoping he will be able to help somehow. The depression is very deep.

I have been on Vimpat for several months. It is interesting to hear about several people having trouble with it with feeling tired all the time. That is one side effect I don't seem to have from it. My side effects are listed in a post up further in this thread. Thank everyone for being here. lonnie
 
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