First two weeks with Vimpat

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So I thought I would post here in case others were looking to start Vimpat and wonder what they were getting themselves into. =)

Well I gotta say it's working out pretty well. A little cloudy headed. Still feel a bit on the edge of having a seizure. Kind of like, "I feel like I'm going to have one...." feeling. Also feel a little posti-ictal-ly. All of that coupled with some moving around (bike ride, jogging, yoga) and LOTS of water, it seems to be pretty tolerable. I cannot stress how much the water consumption really helps with this side effect.

Once you get to day 10, it gets a lot better. However, I've been doing a really slow titration of 50mg for two weeks. Then going up to 100mg to see how I do that. The normal titration is 100mg the first week and be at 200mg by week two. I felt my neuro was just putting me in the general catagory and not listening to me. When I talked with another neuro he said, "Go at your own speed. You know you better and the goal is to get you on meds you can stand."
According to the drug manufacturer, effective therapeutic levels are 100-200mg.

One huge note as a side effect: Nightmares. Be ready for some messed up dreams. I'm still getting a couple of them and they are intense.

I did notice a little slow down in cognitive focus. I am a network engineer and build VoIP networks. So I need to focus. The past two weeks I've noticed it's a lot harder to focus and my memory recall is a bit slower. Sometimes it becomes really bad if I'm not eating or drinking anything for a long time.

So with that, I would say, if you want to go on Vimpat: Hang in there. It gets better. =)
 
Thanks for the update! Hope the good things about Vimpat get better and the bad things fade away...
 
just found this now. went on vimpat in december, 2nd time over. doc tried it a couple months prior but after 10 days i said hell no. didn't feel like me at all.
then after the SIU she asked again, 'temporary until surgery,' so i agreed 'one more try, low dose.' i've stuck with it but i know EXACTLY what you mean about the constant 'i'm gonna have one.........' 'okay now i'm gonna.......' in fact i'm feeling it as we speak. sucks. but it has seem to have helped overall. and i literally mean overall, not a bunch. i don't care for it and it will be the first i go off after surgery.
i was thinking too tho, it may not be the v on its own, but the cocktail of v, lamot, and carbamaz. i'd be interested to hear if anyone else has the same cocktail and how they feel :)
 
For me, Ive tried Vimpat and got up to 100mgs. But as the dose went up, I didnt feel like myself at all. I had days of crying, not wanting to be around anyone, just feeling depressed. They cut my dose in half, and said to try that for a week, but It didnt make the feeling go away. so they took me off of it. Oh and I did have the nightmares too. I hated those nasty things!
 
Just found this after I posted about Vimpat. Bernie...how are you doing at this point?
 
Hi ya!! :)
Me and vimpat are in a complicated relationship. I tried going to 100 mg and could not do it. I have been at 50mg for about two months and have noticed if I do not eat or drink tons of water, I end up a space cadet all day. I used to have daily nightmares since I started. I was also taking a fish oil supplement and once I stopped that, the nightmares have slowed to once every two or three nights. I still get the feeling of, "okay I am on the edge of having a seizure." Which sucks complete ass.
Despite all of that, this has been my most tolerated medication.
I am ready to fire my neurologist though. She wants me at 200mg and my seizure frequency off meds is 1 to 3 a year. I feel that is just irresponsible. Therapeutic dosage is 100 to 200 mg.
Grr.
Hope this helps.
 
Thanks for your reply. So far I am not happy but this is only the second seizure med I have been on so I really did not know what to expect. I guess I thought it would be sucky for a few days but then get better. I am so out of it and more clumsy then I was and I keep thinking this can't be right. I did call the dr and he told me to INCREASE to 100mg. He wants me on the 200mg also. I am spending all of my time laying down. I don't have an appointment until the 10th and by that time he wants me on the 200mg.
I will try your suggestion of more water. Are you able to get around and engage in life on the 50?
 
Morning!
Yeah at 50, if I manage the eating and water intake well, I do pretty well. I was not doing well at 100, so the doc compromised to have me come up to 75 for a couple weeks, then make another jump to 100. I did talk her down to 100 being my max and that I would like a blood draw to see what I am at with levels. See if your doc will do blood draws to see how much the drug builds up in your system.
Other side effects I forgot to mention: memory recall is becoming an issue. Significant drop in mental speed. There seems to be a little bit of rocking when I do not drink enough water. Then I have noticed some weight gain while on this...just a little though.
I did notice that after my first 10 days the side effects did mellow out. Those first two weeks were brutal. It did get better, but it takes a ton of work to manage the side effects.
Frustrating part for me is going through all of this to stop the 1 or 2 seizures I have with in a year. So how do I know the meds are working vs. time just passing? Oye.
 
I am with you. I don't get how you know if it is working or not. I am glad you mentioned the rocking...have it. I will ask about the blood test also.
I guess I will hang with it for another week and see if it gets any better. Are you taking anything else with it?
 
It took me a bit of time to adjust to Vimpat at 200 but I also take Keppra at 3000 with it. I work to keep the weight in check and the dizziness may be my worst side effect but I just deal with it. To be honest I don't know what is Keppra and what is Vimpat because when I started each (separately) I spent many evenings just laying down due to the dizziness level at first.
As far as mental speed I think faster than before and still have not had nightmares. Everyone is different but then again I am on a combination not just Vimpat alone.
 
knothing...do you take 100mg morning and night? They will probably try to add Keppra back in once I get adjusted to the Vipmat.
 
Vimpat is my only med right now. Which I feel very fortunate about. KNothing -- Do you experience any break through episodes while on that cocktail? Do you notice a huge advantage to the B6 vitamins you take? I may start that to combat the Vimpat side effects. I'm currently on a vitamin D Supplement as well.
 
So I thought I would post here in case others were looking to start Vimpat and wonder what they were getting themselves into. =)

Well I gotta say it's working out pretty well. A little cloudy headed. Still feel a bit on the edge of having a seizure. Kind of like, "I feel like I'm going to have one...." feeling. Also feel a little posti-ictal-ly. All of that coupled with some moving around (bike ride, jogging, yoga) and LOTS of water, it seems to be pretty tolerable. I cannot stress how much the water consumption really helps with this side effect.

Once you get to day 10, it gets a lot better. However, I've been doing a really slow titration of 50mg for two weeks. Then going up to 100mg to see how I do that. The normal titration is 100mg the first week and be at 200mg by week two. I felt my neuro was just putting me in the general catagory and not listening to me. When I talked with another neuro he said, "Go at your own speed. You know you better and the goal is to get you on meds you can stand."
According to the drug manufacturer, effective therapeutic levels are 100-200mg.

One huge note as a side effect: Nightmares. Be ready for some messed up dreams. I'm still getting a couple of them and they are intense.

I did notice a little slow down in cognitive focus. I am a network engineer and build VoIP networks. So I need to focus. The past two weeks I've noticed it's a lot harder to focus and my memory recall is a bit slower. Sometimes it becomes really bad if I'm not eating or drinking anything for a long time.

So with that, I would say, if you want to go on Vimpat: Hang in there. It gets better. =)
Thank you for this information. My neurologist will soon be changing me off of Dilantin to another drug, and he mentioned Vimpat as one possibility. I've been on Dilantin for around 40 years so the prospect of going from one to another after so long is scary.
 
I started on Keppra and after a year I had 2 break though tonic-clonic's so my neuro at the time added Vimpat. I still have some jerks and deja vu's but the deja vu are tired directly to insufficient sleep. It has been 3 years like this.
I took B6 for 3 years but it started creating other health issues so I stopped and kept with a multi-vitamin only. I used the B6 due to Keppra and the 'Kepprage'.
There are side effects but as long as the tonic-clonic's are not happening I am thrilled to tolerate almost all of the side effects. But the one side effect that I cannot stand is so bizarre that even my current neuro has a hard time believing me. I have an allergy to Oranges, Tangerines and Grapefruits!! So that one really proves that we all absolutely react differently to meds.
 
I was told years ago by my neurologist not to eat grapefruit or drink grapefruit juice. I don't remember the reason, but suffice it to say that grapefruit is my all-time favorite juice. Go figure.
 
Grapefruit and pomegranate juice (not the actual fruit) can interfere with the metabolism of quite a few medications. Among anti-seizure meds, Tegretol, Zonisamide, Diazepam (valium) and midazolam (versed) can all be affected.
 
oh yes no grapefruit, was told that 10 years ago when i was given my first sz med, carbamazepine.

welcome poet! this is just my opinion but i know others will agree...... i'm not sure after 40 years of one drug (good for you for getting off dilantin tho), that i would opt for vimpat. dilantin is a very old and proven drug, vimpat is still a baby in the aed world. like, baby baby. i can't stand it, was put on it just as a 'bridge' between the SIU and surgery as my mix of carb. and lamotrigine wasn't doing the trick. she prescribed 400mg/day and, um, i don't #^#%! think so. got up to 250 and was walking into walls. i have wittled it down to 100mg (pm dose) so atleast i'm sleeping and don't notice the space cadet thing as bernie said.
best of luck to you, and of course everyone reacts differently, i just know i'd be cautious switching from such an oldie to something so unproven yet.
 
Hi,
I'm so glad to have come across your thread. I am taking 200 mg of Vimpat twice a day and 1500 mg of Keppra. I've been on Keppra for about 8 years so I know how my body responds to it. I started Vimpat on the beginning of this month. I was having a hard time sleeping. My memory hasn't been as strong. I can totally relate to the almost having a seizure symptom. It feels so uncomfortable though. My auras fluctuate. When they get to a certain strength then I know I am going into a seizure but with this medicine I end up not going into a full blown seizure. It's good but uncomfortable. Oh and food seems to stimulate the strength of Vimpat's ability to control my seizures. Overall the almost having a seizure symptom is most uncomfortable. Thanks for your thread though because I don't feel abnormal anymore or out of words on how to describe my symptoms.
 
Hi, Cordero
I am also on 1500 mg Keppra and 200 Vimpat (and 800 tegretol). The tegretol and keppra I've been on 2 years and the vimpat is a much more recent addition. The improvement in seizure frequency is huge now that I've started vimpat. I used to get some degree of seizure every couple of days, and now it is once per week. I know what you mean by the "almost have a seizure" sensation, and I agree it can be very uncomfortable. Mine can last a couple of seconds to a few minutes before they settle down. Which as you say is a good thing because a full seizure doesn't occur. I'm the same with auras: when they get to a certain strength, a know a seizure will occur. With the addition of vimpat, it's like I get to that point in the aura where I would expect a seizure to occur, but it doesn't. It is unpleasant, but at the same time I'm thankful it doesn't progress to a full seizure. Am wondering if an increase in Vimpat might help with this. I have maxed out with what I can tolerate (in terms of side effects) with tegretol and keppra.
 
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