Vimpat

Janus

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I have been struggling with VIMPAT. I'm running out of new meds to try. Uncontrollable epilepsy. Status epileptic. I think that's how you say it. When my seizures usually go for 7 to 15 minutes. thank God for my full- time caregiver who can administer emergency diazepam . That usually putts my body down. I'll wake later with bruises from banging around on the floor. My girlfriend is the twenty- four hour caregiver. Most of my sizing is at night. Usually very late or early morning. My seizing stopped when I added VIMPAT to my regular; that depakote, lamotrigine and blood pressure stuff. The mayo clinic says don't mix VIMPAT with some drugs. One of my blood pressure meds is on that list. I've also been losing my temper! This is like keppra with added depression in a big way. At first VIMPAT seemed to help. But now 6 months later big seizing sometimes. So I'm not sure that that is the cause. But sure looks like it too me. I'll try to reach my neurologist this week. Anybody else have experience with VIMPAT? Depression (from the meds) anger, suicidal ideation, all the usual suspects. Dour, anxious. Hopeless and trying not to care. My girlfriend being here is a life saver. It does come with a big price. We're together 24/7 and even then, usually in same room. This will make anyone on the razors' edge with eminent irritability. Well, ya do what you can right?
 

Sallys

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I have been taking Vimpat since having a grand mal seizure in March. No seizures since but am very depressed and anxious all the time. Have contacted my dr about getting anti depressant meds. Am always worried about having another seizure at any time. I broke my arm during the seizure after breaking it a month earlier. Two surgeries and my life has changed…
 

Janus

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Owch!! I don't know if there is a spelling for that word. Broken arm!? Wow. I've never broken anything(exception biking, I had a complex while screaming down a hill on the bike. I did not have my ability to do anything but just glide along which ever way the bike wants to go. I did not fall over until I unknowingly coasted left, going wrong way in a one-way. Crashed into barricade and the oncoming biker. A crack in the cranium. Knocked out.
I do not know if a closed fracture in the skull counts as a break.
I'm still hoping the side effects of VIMPAT will go away eventually. But does it really matter ? When two days ago another TC. Followed by a day of clusters. If it's not working and the hated side effects. ( Not the least of which is being tired all the time. Taking long naps and still being wiped out all the time) but in my case I guess I'm selfish to complain. The doctor has always mentioned VNS as the best- next thing to try. I've been looking at this for years. This option of the VNS. Is a full discussion on different threads. Just sayin.
 

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I took Vimpat for a while along with Topiramate/Topamax--400mg/day of both. Even then, I averaged 1-3 complex partials per month. I had to switch due to our insurance changing. Our out of pocket cost would have been $1600/month for me to continue Vimpat, so my neurologist put me on 400mg Zonisamide.
I've burned myself SEVERELY--second & third degree 6 or 7 times during complex partials. The first time it occurred was the creepiest. I had boiled eggs & sat on the sofa to eat them. The next thing I knew, my plate was empty & there were huge blisters all over my hands & arms!
 

Porkette

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Hi Janus,

I'm sorry to hear you are having a hard time on the vimpat. I've been on the drug for at least 4 yrs. if not longer and it reduced my
seizures a lot. The biggest problem I had was rapid heartbeat. I did find that if I took a larger dose of vimpat 400 mg. I was having
more seizures so my Dr. cut the dosage down to 300 mg. a day and that was a big help. I don't know how long you've been on
Depakote but I was on it for so long it didn't work anymore and if I took the drug with any type of caffeine that really messed me
up good. Have you ever tried taking phenobarbital or mysoline (primidone) with the vimpat? My Dr. told me that these drugs
help balance out the vimpat and I'm more calm. I wish you the best of luck and May God Bless You!

Sue
 

Sallys

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I took Vimpat for a while along with Topiramate/Topamax--400mg/day of both. Even then, I averaged 1-3 complex partials per month. I had to switch due to our insurance changing. Our out of pocket cost would have been $1600/month for me to continue Vimpat, so my neurologist put me on 400mg Zonisamide.
I've burned myself SEVERELY--second & third degree 6 or 7 times during complex partials. The first time it occurred was the creepiest. I had boiled eggs & sat on the sofa to eat them. The next thing I knew, my plate was empty & there were huge blisters all over my hands & arms!
I hope you have them under control now.
 

C0urt

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i am on vimpat now, and i am ok with just being in bed all day, and being awake at night where there is less movement and noise, but i think that was one of my original sleep patterns, it is quiet at night, when i do seize they are usually when i am sleep, so there is a lot less being aware of them.
 

cadsgj

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Vimpat is the worst seizure drug I have taken. The main side effects were blurred double vision and balance problems. Possibly the side effects came because of other medications though. My other seizure drug was tegretol. I gave the vimpat about 6 months and then begged my neurologist to change it.
 

Army Vet

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I learned very quickly that Vimpat was the culprit of most of my side effects. I used to take my pills first thing in the morning. I got dizzy, double vision. Plus my balance was definitely not good. After that I got something on my stomach first and that helped tremendously. However, my balance is still not the best. If I were to be called to attention in the army, I would probably be wobbling a little 😳😂

I can't remember when I started to take it, but it makes me wonder if it is a contributor to my sleep patterns 🤔 Back in the day I would easily sleep in like a kid in high school or like anyone does on Saturday. For the last three years I've had trouble sleeping which as everyone knows helps seizures occur... However, part of it, I thought, was this was the same time my dad got real sick (still is with cancer 😕) and I just chalked it up to that. Something to ask my doctor. Of course I have moved since then so I have a different doc now so it might be difficult to find out...
 

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Okay, it's happened AT LEAST two more times! Both times while I was out with my friends. I've read the side effects and it describes what I've been feeling like to the "t"

Dizziness, drowsiness, blurred/double vision, nausea, vomiting, tiredness, loss of balance, difficulty walking, shakiness (tremor), or memory problems

I eat the same breakfast and give myself time to digest a little and then take my meds (like I talked about above; all the way back in March). I have some of the side effects more often (balance, memory, tiredness), but double vision, nausea, and dizziness never happened before. I am going to call my neurologist today and tell him I think I need to get off of this ASAP. I think it might also be the main culprit to my sleeping problems.

I'm still having the same number of seizures compared to before Vimpat. I go to the VA, so I can't exactly "leave" my doctor. I say this because I mentioned this last time I was there. However, he disagreed. I know I can't just "quit" taking it because I need to gradually go off of it. Plus, with my disability, if a blood test comes back saying I’m not taking it, then I would be seen as "not obeying doctor's orders" and therefore lose my disability (ie hey, of course you're not getting better; you're not taking your medicine!)
 
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Vimpat experience for wife Mary, mother of 8, seizing on and off since she was child and consistently since 1989: 1.Was up to 600mg vimpat, yes irritable, hair loss, irritable, balance, cognifition etc.. Self medicated down to 400mg, then, 300mg. Now at 250 headed to 200. Mary's worst seizure was when Vimpat was withdrawn for evaluation to install her RNS. We want off of it altogether! When XCOPRI was added in Mary's seizures were cut in half. Mary has been on at least 15 meds, had a VNS and the RNS. All the meds have negatives. The bummer is when you spend, time money and grief and get limited or no benefit. You are quite right about the difference a full time caregiver makes.
 

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Hello. Since my journey with AEDs began in 1987, I've been on 13. I had many different changes in my meds after I started having complex partials about 23 years ago. Before that, I had only used a couple of medications, and even those weren't able to fully stop my simple partial seizures.
 

Plasticmask

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Vimpat made me a bit queasy at first, and it has raised my blood pressure but it's still well within normal limits. Other than that, I LOVE this stuff. Only one GM seizure since I was placed on it, and that only lasted a few seconds. Well, maybe a half-minute. But I didn't require a rescue drug.
Oh and yes: A cracked skull is a broken bone. After cracking MY skull and finally getting out of hospital, whenever I'd visit the team, one of my neuros loves to play that game; YOU know the game: "Does it hurt when I do.... THIS?"
And then squeezes my head like testing a melon.
For years, the ungodly pain would make me seize. Now it just irritates me tremendously, and makes me glare at him. The bastard. LOL
 

Janus

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Maybe vimpat keeps my blood pressure high ( I have two meds for that) . But it seems to work well For me. I have less than 3 GMs per month since I started supplementing my depakote and lamotrigine. started it a
Couple years ago.
I think it gives me more energy. I'm not sure if it's vimpat or supplementation of cannabis, but my memory and enjoyment of reading has improved notably.
If this seems long I am sorry. I lost the proper synonym for aphasia then I would know how to say good bye.


few years ago..
 

Plasticmask

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See, THIS is the reason that I was severely scolded for talking about what I take, on an open Forum.

"Different drugs affect different people differently", according to a poster on a wall in their waiting room. Cute poster, the way that it plays with word redundancy. But if someone said, "I eat celery four times daily for MY epilepsy and it has helped SO much, but all of my teeth fell out" there is honestly a percentage of people reading that, who will start eating celeryx4 daily and then will eventually become CONVINCED that their teeth are becoming more and more loose with every passing day. Do you see?

But sure, why not, Vimpat could be making your blood pressure higher. It's on the list of known side effects, and a couple of million people or more report that, once they're on it.

Anyhow, pot is illegal here so I'm not allowed to touch it and after I mentioned it one of the members of my Team (one who HATES the fact that I don't hear) wrote in giant letters, sideways with a Sharpie, a single word: "PLACEBO" and then added a drug test to one of my blood draws to be sure that I wasn't getting it in the street I guess.

They all feel the same about the new(ish) stuff, made from pot, cbd: "Stay away from it or we'll stop seeing you" one of them finger-spelled to me that same day. They are VERY intense people and want what they want, one of which is for their patients to follow orders like Soldiers.

So, that's what I do. I fall in line and stay there. They've helped me TREMENDOUSLY so the least I can do is what they tell me to do without argument.

That Team are the only Doctors about whom I feel, let that be noted. Most Doctors I will drop like a bag of hammers if they don't do what **I** tell them.
 
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