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Has anyone tried Vimpat yet? If so, will you share your experiences with it (good and bad), decision to take it or not, etc.? My doctor wants me to switch to it. Thanks so much!
I've never heard of it, but here's the web site for it: http://www.vimpat.com/
I'm taking Lamictal and am not happy with my seizure control, I'm willing to try just about anything.
Thanks so much for replying. Vimpat is new to the U.S. so I'm hesitant to take it, although, like you, I also come from the school of "I'm willing to try just about anything." I just came off Lamictal.
I am using VIMPAT 800mg/carb 300mg +VNS. My side effects with it are not bad, there are few.
I have cut down, on the number of my sz. The biggest improvment is my side effects.
Thanks for the reply, Spar, and congrats and your improvement! Best to you, daj
I have been taking Dilantin for many years. I've takin it so long that I have been able to adjust my other medication( Phenibarbital and Mysoline) down to where it's do longer needed. With 400mg of Dilantin a day, my seizures are completely under control. If any dr, tries to switch meds on me and cut me off of Dilantin , I will file a law suit against them for "endangerment". They have all been informed of this.
This change was from 1320mg a day to 400mg aday and it took me about 2-3 years and without DR's orders.
For years people that didn't know me assumed I was a drug addict because I looked so doped up,including the Police. Now no one knows I'm Epileptic unless I tell them.
I had my share of being used as a guinea pig in my younger days.
I am still interesrted in how this new medication turns out with others.
I had great seizure control for many years on Dilantin 400 mg daily--and a "normal," active, productive life! A nocturnal seizure once every five years or so. I went to a general neurologist then, who thought I should switch meds (to Tegetrol XR) rather than increase the Dilantin when I started getting more frequent seizure activity. A few years later, she recommended I switch to Trileptal for even better seizure control. That only lasted for a couple of years, so at that point, she recommended that I go to an epileptologist. Then the merry-go-round/roller coaster of new meds began and now, to borrow your words, I look like a doped up drug addict. And no seizure control. Now I'm basically housebound.
When I agreed to try Vimpat, I told my epileptologist that if Vimpat doesn't work out, I want to try to back to Dilantin.
Congrats that your seizures are completely under control and thanks so very much for sharing your experience, and for the validation and encouragement! All the best to you, daj
Tegretol was my buddy for over 20 years and then I searched for a long time. Now I am trying Vimpat, the side effects go away pretty fast. I am on the first week and I am still running and doing errands, not driving yet but I am optomistic. This medication may be the one that will do the trick. I get sleepy, but when someone needs something I have energy to do it, the dizziness isn't bad like the other medications, I think it is worth a try!
The doc gave me a sample for the first 2 weeks free. I hope you Neurologist or Epileptologist does the same.
It is expensive!
Take care and good luck!
You can drive?
I drove only 6 months and that was in my teens. I am in my 50's. It has been a long time since I have driven. I have worked, I am married, raising children, I should say teenagers!, I am always busy, but I do not drive.
I have had 2 surgeries and a VNS. I would love to have the opportunity to drive, if it doesn't come it doesn't! It never stopped me from having fun in life!
So we can have normal lives without driving. Cool. :)
I'm due to go on it in November and after reading some of the stories on here, I'm glad I'll be at home incase of any side effects.
Anything has to be better than the Keppra I'm currently on which makes me depressed, cry, become suddenly agressive (and I'm usually a shy person) and say horrbile things without thinking which is completly not me.
I know some of my side effects must be due to the stresses of not having a job, but that seemed to fuel the side effects.
I was on Vimpat for a couple of months for grand mals even though my doctor said it was for complex partials and simple partials. She said that it might work even though it wasn't for my kind of epilepsy. Some of the side effects are confusion. I noticed that right before my seizures I was having a lot of confusion. One time I left the house, and I walked about a mile away. I had no clue where I was or what I was doing there. I was waiting to see my doctor to change drugs because I had another seizure right away, and it was obvious that this was making things worse. I had another seizure. This time I had wandered outside in my pajamas in January. I LIVE IN MAINE!!! I had a seizure on my porch, was knocked unconscious, and I now am being treated for major frostbite in my right foot. I could lose a toe!!! As if I didn't have enough problems. I called my doctor right away and got an emergency appt. and started a new med. I begged her not to put another person on Vimpat again. Anyone that is recommended it, do not take it. It made my seizures worse. (I guess it does that sometimes).
I have been on Vimpat for about 4 months now. I am on Lamictal also. After my Vimpat got to 200mg I got so dizzy I could not walk or see straight. So I figured out that I had to have a routine in order for this to work. If it is not done in this order for me, I am out/done/kick me to the curb for the rest of the day. I immediately fall to sleep. Alrighty here goes. In order of what I did
1. Take vimpat after I ate breakfast, two hours after==OMG IM GONNA FALL AND SMACK MY FACE ON THE FLOOR.
2. Take vimpat a few mintues before I eat breakfast ==OMG WTF I CANT SEE STRAIGHT, OOPS WATCH OUT FOR THAT...Ouch that hurt!
3. Take vimpat the same time I take that first bite. ==WTF I'M STILL DIZZY!??
4. Take vimpat atleast 5 minutes after i eat. Wtf? I'm fine, I can walk!?! I don't see triples of you!?!!?
So yeah don't ask me why but if I don't do it exactly as # 4 states I cannot make it through the day. I know it's funny that there is only a few minutes difference between the steps but its the only thing that works. My body is crazy.....
Hope this helps anyone.... Vimpat works great if it works well with your body. It is my "miracle" drug.
Other than that Vimpat has stopped my complex partials (if taken correctly).
Please post some more on this subject...I would like to get some more insight on what peoples experiences are.
I talked to the Lead neurologist who carried out the Vimpat trials as per that dr. Carbamazepine (as well as Trileptal) and Lamictal when combined with Vimpat causes severe dizziness. So try talking to your doctor and see whether you can avoid this combination
been on vimpat two months probly.in the beginning i had that double vision.it bugged me.
everybody has a tolorence level toward drugs.so give it a chance like im trying to do.as our mind gets use to the drug,alot of side effects slow down and go away sometimes.within the next two to four months im hoping that thats what will happen as i just let it controle my seizures as those effects may slow down as time goes on.if i dont see that happen n the next couple months-of course ill ask to be taken off it.just gotta give it a chance for now.ide be able to explain more about how our system tolorates these drugs as time goes,but its a bit late and i gotta hit the sack.
my BIGGEST problem so far besides the effects with vimpat-ive weaned off phenobarb of which ive been on twenty years.my tolorence level was too much so my mind got too use to the stuff.seizures came back and i needed a new drug.--but phenobarbital put me tosleep at night fast for twenty years!now that im off the stuff i cant sleep as well as i useto!like now,its 2am-feels like 2pm.ill end up going to bed,closing my eyes and just twisting for hours cause i havent nothing to put me tosleep like im use to!its just driving me crazy since being off it.its byby pheno and hello vimpat and byby to how fast ide get tosleep at night.I NEED A WAY TO GET TOSLEEP WITHOUT ANY DRUGS.
I wouldnt mind hearing opinions from some whos had these side effects and been on it a few months.has the side effects slowed?is there a reason your giving it a chance?how well have you been tolorating it?
I just started the Vimpat starter kit today. I am currently taking Lamictal and Keppra and will replace Keppra with Vimpat. I started reading all the negative comments and it scared me, but when i researched Vimpat it is mainly for people who dont have bad enough seziures that they needed surgery. I am diagnosed with partial seizure disorder so im hoping this will work because Lamictal and Keppra worked really well for a while, but stopped.
I was on Vimpat for 6 months. I was being told that my personality had changed by those around me, I did not really know what they were talking about but it was apparently quite noticeable, mood swings, always appearing snappy and very quick to get upset at the smallest of things. Stopped the vimpat and and continued the other medications and my demeanor returned to normal. Good decion to stop it.
Hi. I was just wondering how the Lamictal and Vimpat combination were working for you. I am currently on 400 mg. Lamictal XR & 2000 mg of Keppra XR a day. My seizures have increased since I've been on Keppra and my Doctor at Duke Epilepsy's Unit finally told me today that he doesn't believe Keppra is going to work and he wants to try Vimpat. He is going to start me at 50 mg. twice a day for a week and then increase it to 100 mg. twice a day. I will come off of the Keppra XR by reducing the doseage by 500 mg. a week.
We thought I originally had complex partial seizures, but after video EEG monitoring for 4 days we discovered that my seizures were generalized. I asked him if Vimpat was for generalzied and he said they were using it with some people who had generalized.
So how has the Vimpat worked so far if you don't mind my asking.
Are you on it with anything else? They have me on it with Lyrica 150mg, vimpat 400mg, and Lamictal bcuz I couldn't keep tc's under control. I love the fact I have no side effects from Vimpat. My neuro told me it works great with other meds, but so far I love it.
I will be switching to Vimpat soon also. Will be taking it with Lamictal. Can't wait to see what you find out about it. Will be glad to share what I learn with you.
Just got a prescription for it but, I am having trouble finding a pharmacy that carries it..They are trying to order it for me now. Will be taking it with Lyrica. Will let you know what I find out.
Vimpat???......Isnt that a combination of German and latin word for "verplunkt"? ahh so thats the trick on how the Pharmaceutical companys configure on these non-dictionary names for their new drugs!!!
SO anyways now that Miss California just officially got fired by Donald Trump today the makers of Vimpat can hire her for her extrodinary looks....no experience necessary needed to be a "drug sales rep" in order to get hired as a drug sales rep you just have to look like Miss California!!!!
Pharmaceutical field sales repping? Nothing to it! Just have to go out there and smile and push yet another pill to your local doctor They dont have to know anything about the pill at all....most of them dont-they're just hired to be dressed up like they're fashion runway models to give to the docs a couple of sample boxes in the office!
LETS NOT FORGET how good ol docs handwriting will look for this new one to prescribe?? will look like a capital V with a couple of squiggly marks behind it!!!!
Why don't they call it sezfree or seznomore.If miss california or ex miss california now needs me to go on a road trip to push the trip sign me up.That's if I get my wife's OK of corse.That girl is one smart foxy lady. _____ with E would be protesting every where she went I imagine.
(*edited by epilepsy.com webmaster*)
The last time we went to see my doc we talked about the stuff.Anyway his office called to tell me that I could get a scrip for it if I wanted.My wife wants me to try it but I want to wait to see what my doc says next time I see him and see what he thinks after it's been on the market for a few mts.I'm going to see what you good people think and then maybe will.I've been doing very good lately.Getting off generic meds helped me a lot.
Have been on it for about a week now and have noticed no negative side effects. Currently at 100mg at night but will go up 400mg after 2wks. Taking it with Lyrica 50mg am and 100mg pm. So far I like it, still having seizures but I notice frequency is not as much.
Last week on Tuesday I started Vimpat. 50mg twice each day. The 2nd night things went BAD. By bad I mean Hallucinations and Palpitations took over- I was interacting with the TV and cars going by, my entire surroundings were out to get me.I didn't sleep at all. Thank God for my Mom, she sat with me. When I started talking about guns & knives she decided it was time to head me to the E.R where all kinds of tests were done. They confirmed it to be a reaction to the Vimpat. I stayed overnight and last Thursday and most of last Friday are non-existant in my mind. I was released last Friday afternoon about 5pm. This was reported as a rare interaction to the Vimpat but I still feel I have it in my system. It is a controlled drug, be careful. I had to tell this story, pass it on to whoever needs to hear it and let me know what you think I should do please. Thanks for reading this. Your friend Paul.
Paul J. Bugbee "you always have a friend" just gimme a shout
I'm so sorry to hear what you had to go through, Paul, but thank you so much for sharing your experience.
I just got home from the hospital today; I had an allergic reaction to Vimpat. I started feeling itchy early last week, but then it subsided. When I woke up Saturday morning, though, my throat was constricted, my eyelids were swollen, and I was covered with an angry rash. Since I can't take any OTC antihistamines, I had to go to the ER and ended up being admitted. Even now that I'm back at home, I'll be on a steroid for a few more days.
I did feel that the Vimpat was providing good seizure control, though, so hopefully it will beneficial for others.
Take care, Debbie
Would youet me know how Vimpat worked? I just started taking Vimpat Sunday Aug 16,2009. I see you have been on Vipat for almost 2 months. I have gone through alot of meds and I'm on 4 meds now. I just hope this med works. I sick and tired of all the meds. I just feel like giving up on all the meds. Nothing seems to be working. Hope everything is ok and you are getting your seizures under control.
Im sorry that you all have had to experience those horrible side effects theres either small or humungus
I started on Vimpat two weeks ago and Im happy to say that yesterday and It would have been today if I had eaten when I was suppose to I did not have any sz and I saw a movie that triggers sz not as a test just because Im staying with my sister and her husband
I am being taken off of keppra xr still am on phenobarbital, and zonegram
I havent had any side effects so far I do get drowsy when I increase the med for a couple of days
you all are right when I called in for the rx they had to order the Vimpat but maybe its cuz the med is new.....I dont know
good luck all
Thanks for letting us know your experiences with Vimpat, Christine. I really hope it "does the trick" for you and gets your seizures under control.
well its been 4 months and my seizures have gone from 30 to 40 a wk to 0 to 5 a week IT IS WORKING for me thank God I have been blessed. I hope you are in same boat! God Bless You
I'm on 1200MG daily of Carbatrol and 2000MG daily of Keppra XR. The Keppra hasn't been working so I've been given a prescription for Vimpat (lacosamide). Eventually over the next month or two I'll be weaned off of Keppra. Here goes nothing...
How many mg. of vimpat do you currently take?
Right now I'm on 200mg Vimpat a day. 100 in the AM and 100 in the PM. I'm also taking 1400mg (600mg AM and 800mg PM) of Carbatrol daily and 2000mg daily of Keppra (1000mg in the AM and 1000mg in the PM).
I'll be honest with you - what with the Vimpat and the Keppra - I'm at my wit's end in terms of losing my head. I don't seem to have any patience anymore and I have trouble staying awake by late afternoon. I'd be prepared to have an anti-depressent in the mix to try and help balance things out.
My boyfriend is in the middle of starting it right now, they're hoping it'll stop his grand mals even though it was only tested on partials.
My wife wants me to try thr stuff even though I just hit 4 mts w/o a sez.Fewer side effects is what she is hoping for.To be blunt I'm scared.
It's not a good idea to switch med's when what your taking now has your seizures under control.
It's you that's having seizures and you that knows which meds are working right,
not your wife. So don't let her make your decisions.
Vimpat and I are not to friendly. My husband is a pharmacologist and noted that I was bleeding easily and laughed that I should not be working in the kitchen. I told him I am in the bedroom. Then he looked at my face and noted my legs. He said " Are you taking a new medication and I said yes!" I was trying to keep my balance too. I was on the 50 mg. dose then. I thought that would go away. Then I had a seizure.
My seizures increased. I contacted my Epileptologist and he was out of town. I thought it was coinsidential. I was taking a mammogram the next day and I lost my balance and they had me go the ER. I lost my speech do to a seizure. Phooey! My blood levels were off and I told them I just started a new drug and they contacted my Internist and tried to contact my Epileptologist. I was feeling better and I went home.
My Internist noted my slurred speech the next day and asked what was wrong. I had left a message w/ the Epileptologist and he told me to lower one of my high dosages of medications I had been taking for a long time. That night I had another seizure. I felt like throwing my hands up in the air. Still problems w/ my gait., my sight but its the weekend and I thought I will feel better eventually.
Another friend is doing fantastic on the medication so it varies from patient to patient! I wish the best to all!
Ok I got my sample starter pack/ some coupons to incurage to try it. And a script for the stuff. I still have'nt decided if I will or not.
Today is July 24,2009 at 11:24 pm, I been taking 600mgs daily of lacosamide. 200-400mgs was aproved in both Europe and then by U.S.'s FDA. I've been involved in a study since 6/08 for information that is now being used by UCB.
i was in the study group with the actual pill taking 250 morning and 250 evening for the past 3 years...... i also take topamax. the drug is not to bad. during the period, i maybe had two or three auras a year. prior to the period i might have had 1 a month.
during the study - i would have to check in with my neuro approximately every 3 months. they would concentrate on ekg and blood. i would always have questions to fill out.
here is where you should be concerned since the questions centered around the following:
how happy are you - are you depressed
how is your memory
and of course, have you experienced any change in your seizure behavior.
***********my big effect was in my memory, i had to adjust for remembering certain items.***********
it was not like where did i leave my car keys, but names of people who you have not seen in a while - these were things i usually had no problem with in the past; as well as other similar items.
In other words you was a willing guinea pig. I'de make them pay me to test Medication again,
aren't we all---
the drug was approved in europe. yea, you make a couple of bucks. they also constantly check in with you and check all you vitals- make sure your cholestrol is in range and all that other fun stuff. the other plus, it got my wife off my back about going to the doctor.
anytime they prescribe a new drug or change our drugs we are all guinea pigs. how long does it take for you to get up to speed on the drug. once there, we are all testing drugs.
when they prescribe drugs --- all they do is throw some drug against the wall and see what sticks. lets see you try that. that did not work, lets try this ---- and so on.
there really is no science to it.
think about it.
what did i have to loose?
Thank you for your statement! I keep giving myself mini-mental states of time, place, people give 3 words, I cannot remember, and then subtract by 7's from 100 etc. Names of people It is crap! I am not demented like a regular demented patient or confused. I am not totally demented. My seizures are alot better. I have to stimulate myself more. In a sense, I am much better and in one sense my Internist told me I was more alert and laughing more . I had to get use to the medication, like you have to other seizure medications and then you do much better. I hope it stays this way for me! I am on 250 mg. morning and 250 evening. I also take Keppra and Zonegran.
I have been on Topamax for about 15 months with some unwanted side affects. Mostly the problems were memory related, speech impediments (could not find the right words) while speaking, repeating myself, etc. I have recently discussed the idea of changing medicines with my doctor and switching to Vimpat. I started a sample pack yesterday (50mg twice daily) of Vimpat while continuing the Topamax (100mg twice daily) for the first week. During week #2, I will switch to 100mg twice daily of Vimpat and 100mg once daily of Topamax. Week #3, I will switch to 100mg twice daily of Vimpat and stop the Topamax. I return to the doctor during week #4 for follow up.
I have been very fortunate in that I have only experienced two seizures so far, June 2007 and August 4, 2009. The last one was my fault. I decided on my own to stop taking the seizure control medicine because I declared myself cured. I now know better. Don't make the same mistake that I did. Listen to your doctor and take your prescriptions.
I will post updates over the next few weeks to let everyone know how the Vimpat is working. Good luck to everyone and keep posting your experiences with Vimpat for others to read about. Where can I get some coupons for Vimpat?
Vimpat was not the wonder drug it was supposed to be for me. My Neurologist was excited about the prospect. None of the other Meds had worked. Vimpat lasted about 4 weeks before I broke into a series of 4 siezures early one morning before waking.
The Dr. was excited? That goes to show that the Dr. wasn't switch you to Vimpat for your advantage, but for his/her's profit. He was just using you as a guinea pig.
so, you seem very negative.....
what did your doctor put you on thru the years? what side effects have you experienced?
as I stated before, most doctors throw a drug against the wall and determine what helps you being seeing what sticks. they all start with the basics and work their way up the ladder.
I've been taking lacosamide which is the basic drug in Vimpat, since 6/08. I have not felt any side effects, and the medication has been more therapeutic than any other. I began experiencing seizures in 1974, and tried many meds. and when my L. temporal lobe was operated on in '96, it was unseccessful. Lacosamide has been better than any other attempt I've made.
Started taking Vimpat with Lamictal and Pheno. Taking 400 mg. day. My seizures are scheduled and I have episodes every 2 weeks. I made it 4 wks without since starting Vimpat then had seizures for 3 days. They use to last for up to 10 days. so, it must be helping. The only side effects I've noticed is the same side effects as if toxic. 1 hr. after morning dose my eyes will cross and I can't keep my balance. It only lasts for about 1 hr. The Dr. didn't seem concerned. Would love to hear if anyone else had these side effects and if they go away. This has only happened about 5 times in 4 weeks. Other than that I have no complaints.
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