Vimpat, a new AED, has anybody else tried it

suebear

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I am taking a low dosage of Vimpat at this time. Note, I currently had a VNS years before being given this medication. The reason for Vimpat is due to the removal of Lamictal. I was started at a higher dose but we discovered I did not need that high dose due to another reason -- I have a DBS that controls seizure activity itself right at the core. I am considered a rare case as the VNS is not being turned onto any specific settings, it is left on default and has been since I got the new replacement (smaller version)

At any rate, after all of the above took place, my medication amounts have dropped in regards to the Vimpat and the other two I take. I didn't experience any side affects from Vimpat but that does not mean you will not. Something you may want to speak with your pharmacist regarding are how you feel after taking the dosage and if there is a change of improvement as the half-life of the Vimpat begins to wear down for your next dosage. Those type of things are very important to be aware of.
 

suebear

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Good feedback suebear. Thanks
Glad I was able to help.. something else I started doing is keeping a brief log in note pad to show the change out of the medication and make note if I felt any difference including notated any seizures that took place.

It gave the specialist an over view of what was happening at the next appointment.
 
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I am on vimpat ---100 mg. 2x a day; tegretol 400 mg. 3 x a day, lamotrogine 300mg.x2 a day. The worst side effect of vimpat is it makes me incredibly dizzy for about 30 minutes. It is to the point where I slur my words. I also do not have trouble sleeping with this drug. My seizures are more frequent that when I was on depakote, but when they do occur, they are not as severe.
 

Hand of Blood

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O gosh just came across the thread. My doc trying to put me on vimpat instead of keppra now I don't know. I already get dizzy and have vertigo and extreme tiredness with tegretol I really don't want it doubled!! I don't know what to do! Grrrr
 

lynnrx52

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Hand of Blood, Since all of these meds affect each person so differently, if your doctor still recommends after you tell him/her of your dizziness and vertigo perhaps you should try it. If your dizziness and vertigo get worse after having given it a little time then of course you can go off it as per docs instructions.

I have been following this thread for a long time and have heard such a variety of experiences with Vimpat (equally good and bad) that you really can't tell what side effects, if any, you might experience until you try it. Unfortunate that we have to experiment with ourselves this way but that's the nature of the beast.
 

Hand of Blood

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I just call all AED hell tablets. The amount of side effects and long term side effects and interactions with other meds, I'm just hoping some day there is something better than this! Does anyone ever look up the interactions with other tabs? I never do
 

Lovetorun

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Hey, if you don't mind me asking, what kind of epilepsy does your son have or what part of the brain or is it a lesion?
 

lynnrx52

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Lovetorun if you're asking me (Lynnrx52) here's the skinny:

My son had a massive brain hemorrhage as a baby. He has a lot of brain damage all over, I think more on the left hemisphere and frontal lobe. He wound up with Hydrocephalus so he has 3 shunts that shunt cerebrospinal fluid from the ventricles in his brain to his abdominal cavity because the normal pathways for the fluid were compromised by the bleed.

He started out with myoclonic jerks as a baby, then drop seizures as a toddler (up to 20/day). At that time we did a variety of things including a Ketogenic Diet and injections of AdrenoCorticoSteroidHormone (ACTH) for two 6 MO stints (that seemed to work). Then after a shunt infection (that goes right to the brain) and subsequent serious antibiotics (the kind they inject right into the shunts, therefore brain) he started having gran mal seizures. That's what we deal with now, the gran mals. He had no seizures for many years on Depakote but then he got Testicular Cancer (went through chemo et al and is now in remission) and ever since, his seizures were no longer controlled and side effects from the Depakote became too severe and we've been juggling different meds ever since trying to find a combination that works with tolerable side effects. Right now he's on Vimpat 100mg 2x/day, Trileptal 600mg 2x/day and we just started him back on Depakote 250mg 2x/day. He also takes Clonazepam and Paxil for Panic disorder that I believe is caused by either the Vimpat or Trileptal (I could be wrong about that). We are struggling with a swollen tongue that causes him to choke and stop breathing at night for a few hours after his evening meds. Our plan is to up the Depakote and get rid of the Vimpat to see if that helps.

Hope that wasn't too much info. :)
 

qtowngirl

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I am on vimpat ---100 mg. 2x a day; tegretol 400 mg. 3 x a day, lamotrogine 300mg.x2 a day. The worst side effect of vimpat is it makes me incredibly dizzy for about 30 minutes. It is to the point where I slur my words. I also do not have trouble sleeping with this drug. My seizures are more frequent that when I was on depakote, but when they do occur, they are not as severe.
hey i found a med twin! i am on the same three meds as you, and vimpat has affected me the same. i don't get 'dizzy' per se but within an hour of taking it my eyes go wonky (glass over and i can't focus on most things), and i generally feel off, don't get much achieved for a few hours until it wears down. this isn't every day, but at least a few times a week. two days ago i'd had enough (it was purple day and i had lots of plans!), so cut my dose down for the second time.
my seizures also are not as severe since starting vimpat, and i am also on the same dose of lamotrigine :)
 

qtowngirl

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HOB,
it's smart to look up but also your docs job to know and tell you when he's prescribing them. my gp, not even trained in seizures or e, knew that lamotrigine causes tegretol to metabolize faster so it's common to be on a good-sized dose of lamot., or for you and your doc to keep an eye on need for increase.
now, that's just a couple that i'm on, however it's quite assumable that many drugs have similar effects on each other and it's actually quite vital to be aware. scary stuff and it sucks big time :(
 
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Been on Vimpat (200 mg 2x day) for 9 months now and am adding zonegran back in currently at 200 mg at night...I used to be on 600 mg of zonegran for many years which worked great but I lost sooo much weight. My face has been turning bright red and warm on and off for quite some time now...is this from the Vimpat?...any help would be greatly appreciated.
 

suebear

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I just call all AED hell tablets. The amount of side effects and long term side effects and interactions with other meds, I'm just hoping some day there is something better than this! Does anyone ever look up the interactions with other tabs? I never do

I've been on so many medications in the past, I'm 45 as of this past March 22, and since that time I have taken 20 medications. I have chosen to question all medication side effects and what type of reactions take place. I also work closely with my pharmacist as they have a specific book on hand to them only which they can obtain information from patients and consumers cannot get access to. When something goes wrong and a question comes about the first person I call is the pharmacist in town and ask if he would pull up the medication in question and review my possible theory or what the side effects are.

If there are still questions, I bring them up during the next visit I have with the neurologist and I also mention to him the findings I have located (if feasible) from the pharmacy discussion. It is well worth the time to research medication on the Internet if you have an issue or a side effect as it could help better your own peace of mind including your health; that is just my personal opinion.

Regards,
Suebear
 
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I'm tired of drs....they give you a pill...if you aren't aware that what is happening to you could be a side affect of your med...the dr won't tell you...I've been running around from dr to dr my entire life (which is now 40 years)...between epilepsy and myasthenia gravis the drs don't know what to do with me...I'm getting married in July and I really don't want to have a red face...I'm goin crazy...do I have a sinus infection (see an ENT)...am I allergic to something (see an allergist)...or maybe a dermatologist...or is it just the Vimpat........... :eek:{
 

suebear

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I'm tired of drs....they give you a pill...if you aren't aware that what is happening to you could be a side affect of your med...the dr won't tell you...I've been running around from dr to dr my entire life (which is now 40 years)...between epilepsy and myasthenia gravis the drs don't know what to do with me...I'm getting married in July and I really don't want to have a red face...I'm goin crazy...do I have a sinus infection (see an ENT)...am I allergic to something (see an allergist)...or maybe a dermatologist...or is it just the Vimpat........... :eek:{
I've had epilepsy since the age of one so this is not anything new to me and taking medication is nothing new to me. I get frustrated over seeing doctors just like anyone else but it is something which I have to deal with. I've learned to cope with it just as everyone else who has a medical condition needs to deal with the matter. I've found a lot of help through my husband as he's someone who backs me up as support. Something else that I have which backs me up is a log which I keep daily when changes take place and will print out a copy then deliver directly to the doctor when visiting.

Many think that is too many extra steps to take but I look at it as saving my life and possibly helping others who are in the same or similar situation. Doctors have so many patients they see throughout the day the fact I provide a log to them is my way of providing assistance as it shows how many seizures I have had, how many migraines I have experienced, and any other changes that have taken place.

Take the information for what it is worth. :twocents:

Regards,
Suebear
 
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vimpat side affect or not

I was diagnosed with myasthenia gravis in 2006 and I've had epilepsy my entire life. I am currently on cellcept 500 mg tabs 2 tabs twice a day, prednisone 5 mg/day, vimpat 200 mg 2x/day, zonisamide 300 mg/day, and clonazepam 1 mg/day.....I've been on every epilepsy drug there is...I choose not to have surgery...I thank god every day that I am currently able to breathe and eat, that I am not being tube fed as I have been in the past...I am on a drug coctail of vimpat and zonisamide (as stated above) for complex partial seizures, right temporal lobe epilepsy and my face has been turning bright red and warm. I was started on Vimpat roughly 9 months ago...and am being put back on zonisamide because I am not going to be able to afford vimpat...I just want to know if anyone out there might know if my warm red face might be a side affect from vimpat or zonisamide...

I also have kidney stones, osteoporosis, anemia
I have had a thymectomy for mg
I had a kidney stone removed
I had skin graft surgery for 2nd & 3rd degree burns received for a seizure I had while I was cooking
 

qtowngirl

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is it just generally red or does it 'flare up'? like say, fine one minute then feels like it's on fire the next, for a few minutes at a time?
 

lynnrx52

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It's probably your autonomic nervous system. This is something that happens to perfectly healthy people and has little medical implication other than brief discomfort and embarrassment. I wouldn't be at all surprised if it were an effect sparked by any of a number of seizure meds.

My son used to get the red, warm face which I attributed to Depakote. He used to take Zonisamide but I didn't notice the red face with that one in particular. I haven't noticed it with the Vimpat and Trileptal he now takes but we recently added Depakote back in and it might start happening again...don't know.

Probably nothing to worry about but for sure mention it to your docs.
 
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vimpat side affect or not

qtowngirl...is seems to "flare up"... fine one minute then feels like it's on fire the next...but it's more like I can be fine for hours than all night my cheeks and chin are bright red and hot (hot only sometimes)...but I've been sneezing lately and my eyes have been watering...I moved to MN last July...could it be allergy/sinus related or is it more likely to be the meds...just looking for an opinion...this red warm face thing is new for me but I hate to run around wasting time and money on specialists if there's just a simple answer right in front of me.
 

lynnrx52

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Onedayatatime; If you don't mind me giving my opinion...Could be allergy, could be anxiety could be just the autonomic nervous system (any of which could be caused by meds or not). You might want to do a little diary...what you eat/drink (especially things you don't eat regularly), usual and unusual activities etc. as well as occurrences of the red face and any warmth, heat etc. You should definitely ask your doctor about it. If you have some diary info to give him/her that would help the doc make an informed diagnosis. You're on serious meds. Don't ever feel like you're making too big deal out of symptoms that bother you. As they say, 'better safe than...'well you know.

I'd start with your primary doctor.
 
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