Had 2-week VEEG; Vimpat monotherapy

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masterjen

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Hi
I just returned from my 2-week video EEG. During the time there I was off all medication, and the doctors now want to start from scratch in terms of restarting medication as they are querying that I was overmedicated to the point that seizures may have been worse because of this. The current plan is to see how I do on Vimpat (which I have taken before in combination with tegretol and keppra) as monotherapy. Has anyone here taken Vimpat by itself? What I read refers to it being taken as an adjunct medication, not as a single medication.
 
Hi MasterJenn--I'm sorry I can't answer your question as I am not on Vimpat, but I am very curious about your post. I went from no seizures at all on just Tegretol to continually increasing seizure frequency and a new seizure type after he added Neurontin, and then Topamax, and I too have wondered if tampering with my meds is what caused all of this. Why did they conclude overmedicating was the problem? Did taking you off actually reduce your seizure frequency? Thanks for letting me ask a question rather than answering yours, if you don't mind! :)
 
hey girl ;)
my only question is were you 'lucky' enough to have any seizures? HUGS, hope so!

-was on vimpat w/carbamazepine and lamotrigine, hated it. i've read too it's usually in conjunction with other meds.
there are a few threads on here re: vimpat if you want to hear other's experiences.
 
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During the video EEG I was "lucky" (lol) and did have 2 seizures (mine are nocturnal) with possibly a third - the doctor is unsure if that one was a seizure or nocturnal stirring although it did have features characteristic of a seizure. There was no EEG abnormality correlated with the seizures which is kind of unfortunate, I guess, because it would have been a little more reassuring in my own mind to know the exact what and where of the problem. Based on the features of the seizure, they have been termed nocturnal frontal lobe seizures, which is what the seizure specialist had suspected all along.

As for the determination of possible over-medication: I began reducing medication for 1 week prior hospital admission (with dr. approval) then for 2 weeks of video EEG I was medication free. During this time seizures were reduced in terms of severity and extent/duration of seizure after-effects, although frequency did not change and still hasn't. The post-seizure symptoms I had when fully medicated were not only general fatigue and "disconnection" but also much like medication toxicity (severe eye sensitivity, dizziness, ataxia, and sometimes verging on confusion). I was susceptible to medication side effects at the best of times, but it seemed they became much worse post-seizure. Now the Drs wonder if over-medication/toxicity made my body more vulnerable to (or sensitive to?) the actual effects of the seizure itself, thereby making seizures more intense (as well as clustering)which in turn made seizure after-effects more intense.

I have been out of the hospital for 5 days and I haven't started the Vimpat yet, although seizures still occur about every 5th night (the last one was 2 nights ago). Right now it feels so great to not have medication side effects; I feel like ME again. Admittedly it is in the back of my mind, though, that during those two weeks I did NOTHING except ride an incline bike for 1/2 hour once a day; otherwise I was lying in bed. So I am wondering if once I am back into the normal swing of things (working out more regularly and heavily, back to my part-time work, and doing the normal every day things) if seizures will pick up again and I'll wish I'd have started the medication. But for now . . . .
 
Vimpat I tried that and I'm allergic to it.I've been taken Tegretol since 1975 when it came out.I wish I was on Monotherapy but I'm on four drugs.Tegretol,Topamax,Onfi,Phenobarb.
 
Yes, and I have had great results. Vimpat stopped pretty much all of my seizures at night, I only have nocturnal seizures. I also have been on a million other medications with way too many side affects from worse seizures, to dizziness, headaches, weight loss... Vimpat I don't or hardly have any side affects I notice. It has been great. I am going on my 7 month and so far so good. I can feel when I'd normally be getting a nocturnal seizure at night but then it immediately goes away, it's like my body relaxes completely which is wonderful instead of thrashing around and waking myself up constantly through out the night. I am finally getting sleep and waking up rested. I will say I do need to take vimpat right at 9/ 9:30pm (250mg) and around 5/6am (200mg) and as long as I keep this schedule it works for me, doctor approved. I have also been on 8 different meds in the last 5 years all of which never controlled my nocturnal seizures so I am a fan even though how skeptical I was after hearing bad reviews, it works for me.
 
2000 mg Keppra 2x daily, 150 mg Vimpat 2x daily.

First the Vimpat controlled any night time seizure activity. Then when simple partials became an issue when I was tired, an increase in dosage made them stop immediately. Been doing great on the combo.

Same as IowaMissFry, I've been getting much better sleep and actually started snoring.

I am certainly a fan as well. Keep in mind, I'm on the combo.
 
N Sperlo and Iowa - thank you for your encouraging posts about the Vimpat.

As I mentioned in my second post in this thread I haven't started the Vimpat yet because I was hoping that seizures might be manageable without medication. No side-effects and feeling like myself was great. Last night, though, I had a seizure while on the computer around 9 PM (only ever had a seizure out of sleep way back when they first started 3.5 years ago) and then had one of the worst seizure nights in a very long time - a cluster of 4 or 5 in the very early morning when still in bed. Part of me says I should start the Vimpat, and another part of me says that maybe what happened in the last 12 or so hours was just fluke although I didn't do anything out of the ordinary yesterday to be a trigger. I shouldn't be so wishy-washy about this, I know, especially since until recently I have been medicated but I am torn.
 
Masterjen, please be careful. Having a cluster of seizures can bring on more seizures. My daughters docs are always very insistent that any cluster (even when she was unmedicated) should be treated because it's not her norm. I know i have read here more than once that "seizures beget seizures" so having some triggers more. If you had that many in just 12 hours, and particularly an awake one, i think i would strongly lean towards starting meds too. Maybe call your neuro and check in?
 
Thanks, chmmr. I will call my neurologist; didn't know that about cluster seizures. Are your daughter's clusters treated differently than with the regular medication that she takes? I've made the decision to start the medication. Although it will take a few days to slowly work up to the desired dose, I hope that tonight's starting dose is enough to hold back further seizures for now. When I was medicated it seemed that after a bad seizure I would have a "refractory period" of some sort (if that makes sense) and further seizures were unlikely. I hope that holds true with no medication in me.
 
Well her first cluster they treated with the med that was going to be her regular medication for awhile (clobazam/onfi which is a benzo so very fast acting and often used as an "emergency med). Now she is regularly on lamotrigine (lamictal) and clobazam so if she clusters i give her a dose of ativan. i hope that you have a peaceful night with no more seizures. Hugs my BC buddy :)
 
Freedom from Vimpat

It is heartbreaking when a drug works wonders and then slows down before coming to an abrupt halt at which point you decide you would rather have seizures than undergo the side effects.
That is the story of my Vimpat experience.
I was weaned off of it in the hospital, it took almost 2 weeks but I can focus again and the room is no longer spinning.
Found a great site called ask a patient.com
When I typed in the drug in question I read posts wondering if I has written them.
:bigmouth:
 
Two weeks?! Man, mine was five days and I was ready to pull my hair out. Kudos to you for surviving that long! Just out of curiosity, what is a Vimpat? I heard that word being tossed around during my VEEG, but they never explained it to me.
 
I'm only taking Vimpat. I have been on it for almost 6 months and had a completely normal EEG a couple of weeks ago. Very few side-effects too. Allowed to drive again!
 
amazing

you must be thrilled!
I hope things continue. I have had normal EEG's for most of my seizure ridden life.
Obviously all brains are different as are all drugs.
I never tell people what to do but I feel like this is one place where I might be understood.
:hugs:
 
I found this thread really interesting so i would like to ask something too. Is anyone here taking vimpat as monotherapy for more than two years?
My previous doctor gave me vimpat as monotherapy about 4 years ago. I was taking 400 mg a day. At the beginning it went really well and the only side effects i had was a sleepiness and some dizziness that lasted for about 2 weeks.
About two years ago the seizures started coming back at first every now and then and and one year ago a lot more often. I told my doctor but didn't do anything about it so i went to another doctor, who was surprised that i only took vimpat as monotherapy. At firts she increased my dosage. every time we increased it, the seizures would stop for about two weeks and then start again. the largest dosage my body could handle was 650 mg a day but i would still get seizures. For a few weeks now i started taking matever as additional, 250 mg a day. So far i had no seizures.
what i felt is that at some point my body got used to the medicine and no matter how much i increased the dosage, it wouldn't work. has anyone had a similar experience?
I hope it works great for you masterjen :)
 
The Question

unfortunately doesn't have a great answer....
I have been having more seizures in the past few days, and I cannot figure out why.
Since my hospitalized detox of Vimpat in August even with a slight increase in Keppra I have been feeling pretty good.
Granted I also take 300mg of Dilantin and 30 mg of Clobazam/ONFI and now 2000 mg Keppra.
Unfortunately after decades of use I am unable to wean the first 2.
All we can do is follow our own intuition and run it by a decent neurologist every so often.
I am Jewish and tomorrow begins Yom Kippur, the day of atonement, we are meant to fast. I have always been advised NO FASTING, but I do it anyway.
I have never had a seizure fasting.
 
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