Vimpat Tips and Tricks

[CBernieBlack]

Hey wonderful people.

I thought I could help anyone who is considering Vimpat or is on Vimpat, but having a difficult time.

Below are some tips and tricks I've learned on how to manage side effects from this drug. These may not work for everyone, but I did notice a change when I implemented them. So take them as options as a plan to help, but also come up with your cocktail of items to help yourself. =) Everybody has different metabolisms.

First off, I will say Vimpat at the beginning sucks. Disconnected, spaced out, slow response, rocking, shakes, short term memory issues, and quick thinking reduction. All of those issues I've managed to deal with by doing some of the following everyday. It's really just being mindful of what you need everyday, so get into the habit. =) The side effect of nightmares I will get to below all of this because this involves talking with your neuro. The nightmares suck and really affected my sleep. So I'll talk about what I did to curb those.

What I do/take:
Drink tons of water. This is the simplest thing that really helps.

Eat food. This helps with absorption, but also just helps your stomach from any pains when taking the meds. Eat small meals throughout the day that give you some pep, but also help you feel less hungry and slow down the impact of the space cadet syndrome.

B-vitamins - Complex B vitamins. Especially B6 vits. This helps out with the mood swings, my help naturally with seizures, and may increase serotonin and dopamine levels. Which are feel good hormones. =)
more reading on that. http://en.wikipedia.org/wiki/Pyridoxine

D-vitamins - This actually may have nothing to do with Vimpat interactions or help in anyway related to Vimpat, but it's really important for everyone to get some extra D vits in their diet. =-) Vitamin D supplements may help with cardiovascular issues which can be caused by Vimpat, but only in rare cases. =) So...really...just go outside if you can and soak up some sun. =)

Caffeine - Now I know it's a touchy subject with epilepsy boards and "should we/shouldn't we" have caffeine while on anti-seizure meds. However I have started drinking coffee in the mornings to help the "vimpat slump" in the mornings. It helps me refocus and I feel like I'm getting some quick response back when I drink some. So take this as a personal comment from my experience, but it helps.

Time - The only thing I really recommend is to hang in there. Time is really the best side effect trick in the bag. It gets better. I have been on Vimpat since Jan2013 and I'm at 200mg now. I took a super long time to get up here. I wanted to make sure I could handle things. So when the doc said, "In two weeks I want you at 200mg. " I told them no. I came up with my titration schedule that worked for me, they signed off on it...and here I am. 8 months later.

Being active - So to combat one side effect - the static hum or just the feeling of being disconnected, I've started just being more active. Forcing myself to get up from the desk and move around in whatever fashion fits really helps.

Blood Draws - So this doesn't have anything to do with side effects. It just helps you see how your body is absorbing the medication. I've been doing bi-monthly blood draws to see where the levels are at in my system. Not only will the docs appreciate this, but it is also evidence to show your doc, "Look I'm taking my meds, they are in a good window...so can I please start driving again?" Blood draws actually make the doc feel better to show liability coverage of driving. I was told, "You have to think of the doctor on the stand answering for your accident. What would they say? What can they point to?"
Below is a link to ARUP's testing for blood levels and Vimpat (Lacosamide). From there you can work with your neuro to adjust levels according to your own body.
http://www.aruplab.com/guides/ug/tests/2003182.jsp

Okay -- so now we come to nightmares. This was the worst part for me. I couldn't sleep. I had some really messed up dreams. Time was not working out on this one. No amount of vitamins would help combat this. When I was talking to my neuro, they wanted me to add Phenobarbital to the mix. I felt this was dangerous and kind of irresponsible. Adding another med to a case when I've been seizure free since Jan2013. Just felt counter intuitive. However, the pressure from my work to drive again, the nightmares, and scientific curiosity compelled me to try.

I have to say that adding phenobarbital really did help. The nightmares slowed and over time I have gone back to normal dream cycles. Not the nightly terrors. I've actually felt rested again. Now I have two working theories for this. One is, Phenobarbital helps you sleep because it's a barbiturate. Muscle relaxer. So you get a little sedated. 15-30mg at night and you are sound as a pound.
The other working theory I have is Lacosamide levels may be slightly reduced by Phenobarbital. So if it's reducing the level of vimpat in the blood, it would reduce the nightmare side effect. Fascinating yes?
http://epilepsy.emedtv.com/vimpat/vimpat-drug-interactions.html


So that's all I got. Hopefully this sparks some conversation with your neuro and leads you to a more informed choice when considering meds. I hope it also helps those struggling with any medication.

Good luck and keep on rocking. :rock:

 

[masterjen]

Not intending to be argumentative at all, but I do want to present the flip side of Vimpat and help people to realize that reactions to medications are very individual. I had none of the following side effects mentioned above; the only side effect I've had during the entire titration process is an hour of feeling on the verge of double vision starting about 45 min. after taking the daytime dose, and I have experienced this only once I reached the 100 mg twice per day stage. Prior to that, absolutely no side effects. I'm now at 150 mg twice per day, along with Keppra (total 1500 mg) and Tegretol (total 800 mg).

 

[IowaMissFry]

I have been on 11 different AED's in the last 3 years and none of them completely controlled my seizures. I have mainly noturnal seizures, but when I'm stressed or sleep deprived, I will get them during the day. My seizures last between 10-15 seconds and most people don't even know I'm having them. I can continue walking, be sitting in classes etc and they happen and pass. I feel a little worn out after but nothing too terrible. I was put on trileptal as my last drug and I got frustrated because although I wasn't having any during the day I started having them more intense and more in quanity than I'd ever had before the medication. I was also very tired even though I was sleeping 10 hours every night and around 3 or 4 in the afternoon I just felt like I was in a dizzy funk. So I stupidly went off the trileptal wayy too quickly over the course of 2 weeks and I have to say the first week I was completely off it I slept through the night it was incredible, I got 3 whole nights of uninterupted sleep! then week 4 hit and my life started to become a nightmare. I started having little dizzy spell seizures lasting 5 seconds between 10-20 times a day, and all through the night and after about 7 weeks off of Trileptal I started having grand mal seizures which I have never had before. I've been through 5 sleep studies and a whole week at mayo clinic and no doctor has been able to pin point why or what kind of seizures or what part of the brain my seizures are coming from. Its been a pretty frustrating road. And although I know it's not the doctors fault I still sometimes can't help but want answers and its hard not to blame someone. So anyways back to me having grand mal seizures I started having a couple a day and then 8 weeks hit and I was having them every hour 20 plus a day. My job suffered, not to mention being able to drive, or even do daily things I just wanted to crawl into a corner and die. I have an amazing boyfriend, but even at times I questioned whether he was thinking, man what did I sign up for, how am I supposed to live life with a person in such a shitty situation. I finally found relief when my doctor prescribed VIMPAT. I was more than skepitcal. So instead of the prescribed 100 mg morning and evening I started with 50mg morning and evening I did have a little insomia and weird dreams, but as soon as I started 100mg twice daily, it was like the heavens opened and I felt calm and NO MORE SEIZURES. It was unbelievable, after a week I started feeling the auras again in the afternoon, and the doc upped me to 100 in the morning and 200 at night and that was the first time in 3 months I slept through the night. I know vimpat is usually used along side another AED but for me it works alone and is amazing. I am usually a person that gets a lot of side effects but not with Vimpat. I can totally cope with a little drousiness in the morning and coffee actually helps! Vimpat let me live again.

 

[CBernieBlack]

It's always fascinating to hear everyone's experience with Vimpat. As Sherlock Holmes once said, "Data. I must have more data." I appreciate everyone sharing their experience. Makes me feel less alone and less like I'm losing my mind.

 

[DH47]

Had a Gran Mal Seizure about 10 years ago and been on Dilantin ever since. About three months ago started having Partial Complex seizures about every three days, went on Depakote and little if no help. Dr. started me on Vimpat 50 morning and evening working up to 100 morning and evening along with the Depakote. We will see, have not had time to see if it helps or side effects. Appreciate info from anyone taking it. Had a 3 day video EEG and it showed repeated seizure activity. Thanks.

 

[knothing]

I am wondering how everyone on this thread taking Vimpat is doing. I take Vimpat and have been for years but I also take Keppra. On this combination I never have morning issues. My combination keeps me wired almost all day, so much that caffeine is hazardous to my health. When I added Vimpat I became allergic to oranges....so a little crazy.

Can't wait to hear from everyone on how Vimpat is working out...

 

[Minkous]

So I just started vimpat in combination with my lamictal which I've been on a few months. But suddenly I am extremely tired: I wake up every morning at 6am with plenty of energy, I take the initiative and clean my parents house top to bottom and do laundry before sitting at the computer for a little to do some work, at 8:30-9:00 I will take my medicine and by 11:00-12:00 I start getting really tired and by 3:00pm I have to go to sleep. Some nights I will go to sleep at 3:00pm and sleep till the next day. Anyone else get this tired and is it just a beginning side effect that will fade?

 

[DH47]

VIMpat

How long after starting VimPat does it usually take effect or for side effects to show up?

 

[bighealey]

I was on Keppra which did not agree with me (aggression side effect). Now on Vimpat I am doing better. I am trying to sleep enough, have water and a breakfast and eat more fruit and good stuff. Most of my battle is with side effects and memory loss because I have only had a few seizures. I have a "mild" case of Epilepsy but a major case of having to take the drugs and follow a healthier routine. I like the idea of making my condition
better through cleaner living. Many thanks for the folks on this forum...again

 

[jewels1964]

What about weight gain or hair loss... has anyone on vimpat experienced that?

 

[Refracting-light]

I take vimpat, keppra, zonegran combo and have for 3 years. Still battle sleepy brain fog and memory loss. I nap everyday or I can't function, but I am very high dose.

 

[N Sperlo]

I sleep a lot, too, Refracting. Sometimes it is all you can do, but after that nap, like CBernie said, getting up and being active helps me. When you're feeling lazy, get up and do something. Maybe it will work, maybe it won't.

One thing that has not effected me at all has been caffeine intake. I have stopped drinking the amount I do and had no problems. I DO still drink an energy drink in the morning, so maybe if I stopped there would be a bigger difference.

 

[nj26bro]

vimpat

I usually take vimpat 200 mg twice a day but I decided to go off the vimpat three days ago. I started getting absence seizure and they got worse so I had to go to the hospital. three hours before I went to the hospital I took 400 mg of vimpat. do you know by any chance if the vimpat would be in my blood because they did do a level and they did end up admitting me into the hospital. they hooked me up to a video eeg and seizure activity came up. I was also on prednisone at the time DR. prescription for asthma. I just want to know if the vimpat will show in my level.

 

[Nakamova]

The half-life of Vimpat is 12 hours. This means that roughly 12 hours after your last dose of 200mg, there would be approximately 100mg in your system. Then, 12 hours after that, there would be approximately 50mg in your system. etc.

But the half-life can vary depending on an individual's metabolism, so those are just rough numbers to go by. It's excreted via the kidneys, so kidney health is also a factor.

 

[Sabbo]

I had been on Vimpat 400mg/day (along w400mg Topamax/day) for a long time. Thanks to a change in insurance, I am slowly dropping Vimpat & adding Zonisamide. Our new insurance requires us to pay $2000/month out of pocket for Vimpat. I had been (& still am) getting breakthroughs.