Looks Like I'm Going off the Vimpat

[tinathesingergirl]

Hey Everyone,

Well after being on Vimpat for about almost 3 months now it looks like it has not been a very good experience. Although I am much clearer minded it looks like at least from my husbands perspertive and as he is the outside obsever here and is the closest to me, we called my neuro yesterday and told him our observations and he agreed that we needed to taper off of the Vimpat. My husband thought I was going to have a bad seizure Tuesday night (I did not) but I did have 3 on the same day last month. Any ideas on what to expect for those of you who have tapered down? I am going to go down slowly 3 days 200mgs 2x a day, 175 for 3days, and so forth.... until I am down to 50 once a day and then down to nothing. Neuro is looking at another med option. I am seeing him again on the 30th of July. Currently also on Topamax and Keppra

Tina

 

[Nakamova]

I haven't tried Vimpat so don't know how the taper will go. But in general I've found that the slower the taper, the less likely you are to have side effects during the experience. I would go even slower than the proposed schedule (unless of course the Vimpat is really driving you crazy). A good rule of thumb is to taper at least as slowly as you ramped up in the first place.

 

[saleen]

My doctor slowly tapered me off Vimpat over six months ago. Everything went fine. You'll be ok. You should ask your doctor about Onfi... depending on what kind of seizures you have. The only thing I noticed with Onfi is a little bit of fatigue. I'm also on Keppra too, so it could be a mixture of both.

 

[tinathesingergirl]

Thank you Both For your replies Saleen, I will ask him when I see him on the 30th about the Onfi if he does not suggest it himself when I see him. I am glad to hear about the no ill effects he plans to do a fairly slow taper down although he was not a bit happy about taking me off it I can tell you my husband had to talk to him quite a bit to convince him of it.

Tina

 

[saleen]

Yeah, my old neuro would not take me off the Vimpat either. Even though I told him it wasn't working like it used to. I took a high dose especially at night and I couldn't stand that buzzed feeling I would get. Every time I closed my eyes the room felt like it was spinning. I found a new neuro last October and as soon as I told him about how I felt about Vimpat he took me off it.... slowly. So yeah, you'll be ok.
I have simple partial and complex partial seizures. I have more of the simple partial (aura's) than I do complex partial though. Right now I am going through pre surgical testing (I think that is what it's called LOL) to see if I am a candidate for surgery.... Hoping and praying I am. The meds don't control my seizures, but Keppra and Onfi did slow them down a bit where I don't get as many and when I do get complex partials they are not as intense. But I still can't drive
I can't take the side effects anymore. I hate feeling tired all the time. Last month I was in the EMU and was taken off all my meds. I couldn't believe how good I felt mentally and physically. What I mean by that is, I was not tired at all even though I was laying in a hospital bed for six days. Mentally I felt clear and physically I felt as light as a feather.... no aches, no pains, no fatigue. I forgot just how good it felt to not take medicine (it's like poison to our bodies) That's why I want to have surgery so bad. I know it's not a guarantee, but I at least have to give it a try! And, it doesn't hurt that I'm seeing one of the best Neurologist/epileptologist in the country! I lucked out big time when I found him

Good luck to you!

 

[Kgartner]

Saleen - I would love to hear more about your experience with Onfi.

My 16-year old daughter was just put on Onfi about 3 weeks ago after experiencing too many side-effects from Keppra, and then developing an allergic reaction to Trileptal. Originally I assumed it was going to be just for a short time (she was going on a trip to Thailand and after she became allergic to Trileptal we needed something we could titrate up fairly quickly) and then we would switch to Lamictal. Her seizures are complex partial with secondary generalization. Luckily so far her seizures have been controlled fairly easily, but she is very sensitive to medication side effects. So far she is tolerating the Onfi beautifully - no side effects at all, and no seizures.

Most of what I read about Onfi suggest using it for only a short time due to the development of tolerance and withdrawl issues. Some websites are downright scary - my husband read the wikipedia article about Onfi and was totally against her staying on it. However, her neurologist says that many people do use Onfi successfully for longer periods of time, and that if she is doing well with it we should just continue to use it. I am now finding more reports like that out there, but still feel torn.

How long have you been on Onfi, and are you planning to stay on it indefinitely? What has your doctor said about the tolerance/withdrawl issues?

Honestly I would love to stick with the Onfi if it seems like it could work for a while. She's been through a lot in the past year, and it would be great to find a medication that truly works for her.

 

[saleen]

Saleen - I would love to hear more about your experience with Onfi.

My 16-year old daughter was just put on Onfi about 3 weeks ago after experiencing too many side-effects from Keppra, and then developing an allergic reaction to Trileptal. Originally I assumed it was going to be just for a short time (she was going on a trip to Thailand and after she became allergic to Trileptal we needed something we could titrate up fairly quickly) and then we would switch to Lamictal. Her seizures are complex partial with secondary generalization. Luckily so far her seizures have been controlled fairly easily, but she is very sensitive to medication side effects. So far she is tolerating the Onfi beautifully - no side effects at all, and no seizures.

Most of what I read about Onfi suggest using it for only a short time due to the development of tolerance and withdrawl issues. Some websites are downright scary - my husband read the wikipedia article about Onfi and was totally against her staying on it. However, her neurologist says that many people do use Onfi successfully for longer periods of time, and that if she is doing well with it we should just continue to use it. I am now finding more reports like that out there, but still feel torn.

How long have you been on Onfi, and are you planning to stay on it indefinitely? What has your doctor said about the tolerance/withdrawl issues?

Honestly I would love to stick with the Onfi if it seems like it could work for a while. She's been through a lot in the past year, and it would be great to find a medication that truly works for her.

I'm on 50mg of Onfi (that's high) and so far the only thing negative I have to say about it is that I feel more tired than usual, but I do force myself to workout and that usually helps me feel more energetic. but I also take A LOT of Keppra which adds to my fatigue.

I've been on Onfi since May of 2013. Currently I'm undergoing testing for surgery so we haven't talked much about tolerance or withdrawal issues. I did ask him about withdrawal issues, he said that as long as you are slowly weaned off it you should be fine. My doctor also told me off many people being on it for long periods of time with no problems.

For right now I plan on sticking with Onfi. It's been over a year since I've been on it and last month I was in the EMU and taken off all medications. I didn't notice anything different, no withdrawal effects. I actually felt great not being on meds.

If it's working for your daughter and she's not getting any negative side effects, I would stick with it. If after surgery my doctor tells me to stay on Onfi, I will. I trust my new doctor.

I read all those websites too, and it sounds scary. Just go by how your daughter feels.

Good luck to your daughter and I hope your daughter continues to stay seizure free and experiences no ill side effects. :hugs:

 

[tinathesingergirl]

Saleen,
Thank you so much for your kind words they are very helpful right now. We really did think that the Vimpat was working well for me and then all of a sudden in the last month I was sleeping like every minute of the day and my memory seemed to be getting worse and worse. I have generalized seizures only. The last 2 EEG's I had showed a lot of seizure activity which is so funny becasue the previous 3 were all normal go figure.... 1 was during my period week (which is when I usually have my seizures) and 1 was not it was the week after it was a 24 hour one. I have no auras just good old full blown gran mals although i may be also be having complex partials before some of them just not remebering them thank goodness my husband has been there to witness every one of them.

Tina

 

[Kgartner]

Saleen - I want to thank you as well! Your words were very, very reassuring to this worried mom! And she's only on 20mg daily, so I'm glad to know that you are feeling no negative effects on a much higher dose. I know that there is really no way of predicting in advance what the best decision is, but I think you are 100% correct in telling me to just go by how my daughter feels. I think that is truly the best guidepost to all of our actions!

And to Tinathesingergirl (love your handle!) - sorry for hijacking your post!

 

[saleen]

Saleen,
Thank you so much for your kind words they are very helpful right now. We really did think that the Vimpat was working well for me and then all of a sudden in the last month I was sleeping like every minute of the day and my memory seemed to be getting worse and worse. I have generalized seizures only. The last 2 EEG's I had showed a lot of seizure activity which is so funny becasue the previous 3 were all normal go figure.... 1 was during my period week (which is when I usually have my seizures) and 1 was not it was the week after it was a 24 hour one. I have no auras just good old full blown gran mals although i may be also be having complex partials before some of them just not remebering them thank goodness my husband has been there to witness every one of them.

Tina

You're very welcome. I hope the next medication your doctor puts you on works in controlling your seizures! (and no ill side effects) :hugs:

 

[saleen]

Saleen - I want to thank you as well! Your words were very, very reassuring to this worried mom! And she's only on 20mg daily, so I'm glad to know that you are feeling no negative effects on a much higher dose. I know that there is really no way of predicting in advance what the best decision is, but I think you are 100% correct in telling me to just go by how my daughter feels. I think that is truly the best guidepost to all of our actions!

And to Tinathesingergirl (love your handle!) - sorry for hijacking your post!

You are very welcome! I'm glad I was able to make you feel better
Good luck to your daughter!