Coming off tablet myself???

[Hand of Blood]

So I been at neurologist he wants me to change from keppra to vimpat, I heard what a nightmare vimpat is with the dizzy ness and I already have vertigo and dizzy on tegretol which I hate the meds but for some reason I can't get off tegretol

Anyway I don't want to go on vimpat I'm seeing my doctor on Friday to ask if I can just come off the keppra as I haven't had sezure in 2 years I don't think I need a add on med, it just gives me anger and extra depression and doubles all the side effects tegretol gives me! If they say no I'm going to come off any slowly anyway I can't stick the anger

Does anyone think I should have the right to come off it as I not having sezures well not tonic clonic anyway

Advice would be great thanks!

 

[mglynn2]

HandofBlood,

I was put on Keppra a few years ago, but had to go off of it because it made me SO sick and irritable. In my opinion, your doctor needs to take what you say to heart..the patient comes first always. If you are not comfortable with something, let him know and you can figure out a new plan together. Also, considering you haven't had a seizure in two years (congrats!) you don't need to put yourself through anything you don't absolutely have to.
I am no doctor (at all lol) but my doctor has given me clonazepam (generic for Klonopin) for when I have a seizure because it calms me down and lets me relax. My sister was also put on a smaller dose of that for anxiety and depression. It really helped the both of us in trying situations, but can only be taken when needed as it can quickly become a dependency drug. That is just a suggestion I would make for if you experience anger/depression side effects, you just have to be careful with it

Hope this helps!

 

[Cint]

Does anyone think I should have the right to come off it as I not having sezures well not tonic clonic anyway

Yes, you do have the right to come off the meds if you think you would do better, but take into consideration other things such as:

~What type of seizures are you still having?
~Could they go into TC if you stop taking Keppra?
~ Could another med such as Trileptal, Topomax or Lamictal be added to help with your depression as well as seizure control?

I struggle with depression along with seizures, also, and some of the AED's are also used as mood stabilizers so ask your neuro about it. Good luck!

 

[arnie]

Yes, you do have the right to come off the meds if you think you would do better, but take into consideration other things such as:

~What type of seizures are you still having?
~Could they go into TC if you stop taking Keppra?
~ Could another med such as Trileptal, Topomax or Lamictal be added to help with your depression as well as seizure control?

I struggle with depression along with seizures, also, and some of the AED's are also used as mood stabilizers so ask your neuro about it. Good luck!

I second what Cint said, and just want to reinforce that if you are still having seizures on the meds you could easily have a TC if you get off of them. I had short trials of both keppra and zonegran and hated the side-effects so I told my doc I would not use them, but I worked with him in tapering and restarting and readjusting the lamictal. You don't want TCs, so please be careful!

 

[Hand of Blood]

I think I have partials but its not fully been tested yet, and they got worse when I took keppra! Which was near 3 years ago. I want to be on only 1 drug and not tegretol but they won't listen to me!
Do you think I should try the other drug? Or just stay on keppra and get it lowered with an anti depressant added?
I am a stay at home mum and with the way everyone says vimpat gives u dizzy and blurred vision I don't think I could handle it!

 

[Fedup]

Hand of Blood

Like arnie I agree with Cint, I am on vimpat and for me I do not see the need for it, but cannot get off it. I does not mix well with the other meds I take and the nightmares I have even though they are now only 2 or 3 times a week. It does not work for me but you might have more luck.

 

[arnie]

Have you been on lamictal? It has few to no side-effects for me, and controls the tonic clonics, and the partials to a degree. Keppra, zonegran and now trileptal are ones that have unacceptable side-effects for me.

 

[Hand of Blood]

I wanted to get off keppra then change my tegretol to lamictal I keep asking and I don't think they are letting me because tegretol is controlling my sezures but I hate the drug it gives to many side effects. It's harder over here to change they don't seem to let you make your own mind up. I heard that tegretol starts makes ur bones less strong over about 9 years and that's how long I been on it.

 

[qtowngirl]

hi HOB,
my reaction is mixed. first off, it is always up to the patient. a neuro can't feel for themselves how you're feeling. if it's bad, too irritable, making you crawl out of your skin, or simply doing nothing for you, then you say you want off. however, they are very trained in tapering off/ramping up on meds, so ya kinda have to work together. if you have a neuro that refuses to do that with you, it's time to change docs before drugs.

i normally would never have messed with my meds without talking to my doc, except for once, and ironically enough it was vimpat. i felt high strung and weird and yada yada. but... two things:
-a new introduction of a drug to your system has to be given time to settle in. if a person isn't going to give it a fair chance then why bother.
-i was just pissed off at the world and knew i was going into the seizure unit and didn't see the need to do anything new until afterwards when we knew more.

well, i took myself off after 10 days, never said anything. yet, my epileptologist is very cool about hearing me out, so i knew even when she did find out she wouldn't flip out. that's what i wanted and whatever she had to say at the time wouldn't have made a difference anyway. but... i didn't give it the chance it deserved.

in the unit and three grand mals, she came in one night with the results, and asked again 'i'd really like you to give the vimpat another try.'
i hesitated, but gave in, only on the agreement that we went SLOW. instead of ramping every week, it was every two weeks. well, that was close to 4 months ago, and i have no regrets. it's helping my partials somewhat and i haven't had a grand mal since i hit a comfortable doseage. like you, i am also on tegretol (and lamictal which i feel does next to shit for me but lose hair), and i suggest not freaking out about the teg. i've been on it for 9 years as well, and had a bone scan done last year. perfectly healthy. it doesn't happen to everyone. if you can have a bone scan every two years to keep an eye on it that's good enough. HOB, if the tegretol helps, don't go off it for fear of bones. every other med has its way of fucking something up, it's just a matter of keeping an eye on it.
(((HUGS))) and best of luck, keep us posted

 

[huskymom]

I was on Vimpat for about a year and while I did not have any of the side effects that you are concerned about, I also don't think it did anything for me. After my week long video eeg, my doctor and I talked it over and I dropped that med. I take Keppra and Carbatrol and for now, knock on wood, that seems to be helping. You definitley need to find a doctor that you are comfortable working with.

 

[MaeDae]

I'm going to start weening of my divalproex and metoprolol (and just had it increased, bummer!) in the next few months. You see, my insurance is changing, I will be able to afford the medicine, but won't be able to afford the neuro dr's. So, I dont need the added stress and if I seize then so be it. But, I refuse to be boxed in. That's the entire senerial. Going to loose all dr's, until I pay off some stuff, like house, car etc.. and I'm looking at, at least another 10 years of debt. We do what we have to, only the strongest survive.

Good luck to you!

 

[Hand of Blood]

hi HOB,
my reaction is mixed. first off, it is always up to the patient. a neuro can't feel for themselves how you're feeling. if it's bad, too irritable, making you crawl out of your skin, or simply doing nothing for you, then you say you want off. however, they are very trained in tapering off/ramping up on meds, so ya kinda have to work together. if you have a neuro that refuses to do that with you, it's time to change docs before drugs.

i normally would never have messed with my meds without talking to my doc, except for once, and ironically enough it was vimpat. i felt high strung and weird and yada yada. but... two things:
-a new introduction of a drug to your system has to be given time to settle in. if a person isn't going to give it a fair chance then why bother.
-i was just pissed off at the world and knew i was going into the seizure unit and didn't see the need to do anything new until afterwards when we knew more.

well, i took myself off after 10 days, never said anything. yet, my epileptologist is very cool about hearing me out, so i knew even when she did find out she wouldn't flip out. that's what i wanted and whatever she had to say at the time wouldn't have made a difference anyway. but... i didn't give it the chance it deserved.

in the unit and three grand mals, she came in one night with the results, and asked again 'i'd really like you to give the vimpat another try.'
i hesitated, but gave in, only on the agreement that we went SLOW. instead of ramping every week, it was every two weeks. well, that was close to 4 months ago, and i have no regrets. it's helping my partials somewhat and i haven't had a grand mal since i hit a comfortable doseage. like you, i am also on tegretol (and lamictal which i feel does next to shit for me but lose hair), and i suggest not freaking out about the teg. i've been on it for 9 years as well, and had a bone scan done last year. perfectly healthy. it doesn't happen to everyone. if you can have a bone scan every two years to keep an eye on it that's good enough. HOB, if the tegretol helps, don't go off it for fear of bones. every other med has its way of fucking something up, it's just a matter of keeping an eye on it.
(((HUGS))) and best of luck, keep us posted

but does tegretol every make u feel drunk every day? just plain tired or depressed?
i been fighting to ge off it for ages instead they add other drugs! makes no since, maybe the vimpat might be ok on me but i still will have the side effects of tegretol, all i want is to be on 1 drug im only on small dose of tegretol and it makes me feel bad, if i got lower it prob wont help my sezures

im stressing out so much i just wnt to feel better, i dont mind the odd sleepy day or odd headache but mine is everyday all day