Has anyone else here tried it?? Epi added this to my Tegretol XR in hopes it will stop my seizures completely since I still have a few after the last brain surgery. It's the lowest dose possible and so far nothing really bad to report other than the same side affects as any other anti-seizure med. I've had horrible headaches since my surgeries and now my mom who believes she's a doctor tells me that this medicine is what's causing my headaches and I should stop it. NO, I didn't listen to her just wondering if anyone else has any info to share about Vimpat?? Hope all of you are doing wonderful!

((((Tigerlilly))))

I've got no experience with that med but I am having dreadful headaches so I am sympathyzing with you. I'm ready to give up and just curl up in a ball and scream...

I hope you get the info you need,

Rhian

Hi Tiger Lilly,

I wish you the best on the Vimpat I know that some of the side effects are as follows:

dizzyness, faint feeling, slow or irregular heartbeat, very moody, poor balance, headaches, and sometimes a violent temper. If heart disease runs in your family I wouldn't take the drug because it puts you at a higher risk for heart attacks that's why I refused the drug when my epi wanted to put me on it. It also can cause suicidal thoughts like many AED's do. You have to watch your liver and kidneys while on this drug also. I hope the drug works well for you. Wishing you the best of luck and May God Bless You!

Sue

I am sorry to hear you are still having seizures after your surgery. I had surgery 12 years ago and still take one med. I also took Tegretol for many years, and it did not stop them. So after surgery. my Epileptologist changed me from Tegretol to Keppra and Lamical which kept me seizure free. I later on my own stopped one med because of cost and stayed with the Keppra. I still take it. The only seizure activity I ever had on Keppra after surgery was a rare aura. No one decreased my meds in the years after surgery, but my present doc suggested it. I am down to half my 2,000 of Keppra and have not even had an aura since I decreased it. I may try to go further. I feel happier too. If I did not have a mirror focus on the other side, I should be able to stop meds completely. My point is that because too much meds can also cause seizures, and because you have had surgery, the focus that was there is not there now. The med is acting on healthy tissue possibly and possibly producing seizures as a result. Are you still seeing your Epileptologist? See about getting off the Tegretol. If it did not help you before surgery, I cannot see why it would after, but I can see it possibly causing them now. Plus, it adds such a fogginess and a dulling cloudiness to daily life.
You are on Vimpat which seems to be a very good med and is made by the same company that makes Keppra. No seizures is your goal. I wrote a paper on Vimpat. The most effective dosage is 400mg. The literature said that they saw no more improvement with doses higher than 400. Good luck with the Vimpat and getting your life going again after surgery. I suggest that you get back in school soon to jump start the neurons that have been under in the influence of meds and seizures for a while. Tattoo

Sue and Tattoo, I did read about the side affects and so far I don't have a horrible temper. I was "moody" before taking this pill which is due to all my pills and my living situation. :-) I don't just have Epilepsy, I also have severe Asthma and Hypothyroidism.... yes fun! Tattoo, I have been taking a summer school class and it has kept me very busy! I have had horrible headaches since my third brain surgery but, I can tell my headaches are more frequent since I started Vimpat. Oh the joys of trying a new AED!! I just got blood work done to check how my kidneys are holding up.
Rhian, I know exactly how you feel with headaches. There have been many days when I've just cried because they just won't go away for me. Sending lots of *hugs* your way!

Are you still seeing the same group of docs who did three surgeries? Because you sill take lots of meds and still have seizures, a change is in order. Fast. Would scare me to be with the same ones. There are many talentes/experienced epileptologists out there who can offer a second opinion and might offer you a better quality of life that more pills and headaches. Consider a second opinion with your PCP doing the referraL. Surgery is supposed to stop the szeizures. I wish you the best.
P.S. My doc, after my switch to keppra, wanted to up me to 3,000mg a day. I wanted less and did not go for the higher dose. I was fine on that, and now down to half. More is not better in all cases, especially after surgey. Tattoo

Dear Tiger Lilly

just catching up here and wanting to wish you the best. on the Vimpat-related headaches, perhaps they will peter out, remember new meds can cause transient symptoms that disappear once you get used to them.

That said, i find Tattoo makes excellent points regarding the possibility of reducing meds rather than increasing, and getting a second evaluation.

be well!

~ waves ~

Tattoo and Waves! How have the both of you been!! Well, the only reason he put me on Vimpat was he was going to try and wing me off the Tegretol since I've been taking that for many, many, years. See I haven't had just one surgery but 3 to help stop seizures. The surgeries have reduced my seizures greatly and I only have a couple a month now. I was told before my surgeries that I may never be seizure free. I was going to have a fourth surgery but surgeons decided it was to risky. As for getting a second opinion, I wouldn't change my Epi for the life of me, I trust him with my life.(compared to many other Epi's I've dealt with) I've been with him for over 15 years now and he is very, very, experienced in his field. As for my headaches, they aren't just caused by my AED's, also from other medications and the main reason is because of my surgeries. :-) Thanks for the info! I hope all is well with you both! God Bless!

Hi Tiger Lilly,

I'm sorry that the vimpat didn't work for you. Just like you I've had 2 surgeries to help reduce my sz. but that is all they haven't stopped. I might have a third surgery done if the vimpat doesn't work by having a neuro pace device put in me. I took tegretol for yrs. and then right out of the blue I broke out with a rash from the AED so I had to go off of it. Just in case you don't know stay away from grapefruit and grapefruit juice while taking tegretol I found out that the enzymes in the fruit can trigger sz. and mess up the drug. My Epi told me to stay away from that and also anything with nutra sweet in it as well as ceil phones because they will cause more electrical activity in the brain that will trigger sz. Here's wishing you only the best of luck and May God Bless You!

Sue

When I see my epileptologist I'm going to tell her to start me on vimpat. I have 3 friends that have started it, and they've been seizure free for over a year. the 3 of them haven't had any problems with the side affects. All I know about it is it's a med started in Europe, and then the USA decided to give it a try. I'm also on tegretolXR, and I hate that one. I ALWAYS get bad stomach cramps that say I'm about to poop, and I always have the runs for so many years I have the roids now.
Sincerely
Shawn