Is anyone else on Tegretol?

[Shugardrawers]

I feel so stoned on this stuff! I stagger and my speech is slurred, you'd swear I was drunk. It's the only thing that works for my particular problem and I'm wondering if it goes away eventually? I can't live my life stoned no matter how much fun it is!

 

[minkydog]

I'm not on it but my DH was--he felt the same way. he never did get used to the feeling of mental dullness. He eventually switched to Keppra and has no side effects.

DS takes a long-acting form of Tegretol twice a day called Carbatrol. When he first started taking it he was droopy for about 2wks, but since then he's been fine. He's been on that for 2yrs. You'd never know he has a seizure disorder.

 

[Shugardrawers]

Doc also put me on something new called Lyrica. It does absolutely nothing. I've been on Neurontin too. Nada. Tegretol is the only thing that works and as much as I love the stoned feeling I can't function like this. It's disheartening to hear someone else never got used to it. I was hoping I'd eventually tolerate it better.

 

[C.Ann]

I know of someone who has to take a pretty strong dose of it twice a day and has had no problems with it for the past 6 years.. Prior to that Dilantin was used and caused excessive sleepiness, memory loss, bone pain and extreme fatigue..

I'd give the doc a call and see if this is a temporary problem or a sign that you can't tolerate it..

 

[Shugardrawers]

I have an appt with the neuro tomorrow and I'm going to ask to d/c this stuff. It makes me really fuzzy and it's affecting my memory as well. Earlier tonight I asked my Dh to turn on the lamp but I couldn't remember the word for lamp. It was just the thing over there. Even after sleeping on it when I called the vet this morning I was still slurring and somewhat dizzy. I had to have DSis drive us to the vet because I was afraid to drive on it.

 

[luvnmy2bys]

My son was on tegretol for epilepsy and had the same symptoms as you. We switched him to trileptal which has the same active ingrediant as tegretol just pharmaceutically arranged differently without the oxygen. This has been a life saver for us. The only down side is if you don't have insurnace it is very expensive almost 300 a month.

Chris

 

[Poohlovr]

Oh, I know Tegretol too well. I was on it for several years with no problem. Worked for my pain, no side effects.
Tried Neurontin, Gabitril, and Trileptal. None of those helped and the symptoms (Same as you described - esp with Neurontin) were horrid.

After a few yrs of needing no meds (thanks to a gamma knife) I had to go back on the Tegretol and guess what?? Those same side effects started with the Tegretol.

It is a horrible feeling. I couldn't even remember my address one day!

Good luck finding something else that works for you!

 

[Shugardrawers]

With Neurontin I eventually got used to it and the symptoms went away. It never helped the pain particularly however. I'm the same as you were. I feel like I have alzheimers. I'm scared to go anywhwere alone.

 

[2BigKIdz]

My husband has been on Tegretol for 13 years, he has not had problems since they got his dosage regulated. You may need to have your levels checked, it sounds as if your dose may be too high. When his levels got too high he would get "loopy" and sometimes pass out (they referred to this as "toxic" levels).

Dilantin was another matter entirely, while he was on that he couldn't think, he couldn't write his name to sign a check it was that bad. He was extremely slow at everything, it was an awful period, not to mention that it didn't stop his seizures.

 

[Poohlovr]

Oh, yeah--I got to the point that I couldn't work (I'm a nurse) because I couldn't remember anything and I felt like I could be a danger to my patients.
I couldn't drive--heck, I could barely walk at times! I bounced off of a lot of walls.

But, it wasn't the tegretol causing it then --it was the other junk (i.e.-the Gabitril, Neurontin, etc) that were added to the tegretol because it no longer worked on the pain.

Now, though, it's the Tegretol causing the side effects. But, it works on the pain that's come back, so I'll do what I have to do. I just may not remember doing it--lol.

 

[momof2inPA]

My sister has severe seizures and takes 2200 mg of tegretol every day. That's 11 pink pills, a lethal dose for most people, but it's really helped the seizures.

 

[Poohlovr]

My husband has been on Tegretol for 13 years, he has not had problems since they got his dosage regulated. You may need to have your levels checked, it sounds as if your dose may be too high. When his levels got too high he would get "loopy" and sometimes pass out (they referred to this as "toxic" levels).

Dilantin was another matter entirely, while he was on that he couldn't think, he couldn't write his name to sign a check it was that bad. He was extremely slow at everything, it was an awful period, not to mention that it didn't stop his seizures.

It's not a case of my level being too high, I don't take nearly as much as I used to--1600mg/day. It (as well as all similar drus) messes with my brain--the neurosurgeon said I am just super-sensitive. Seems like a lot of us are.

 

[Shugardrawers]

To get any real pain rellief I have to take 2400 mgs and that means staggering and slurring. If I take just the on 400mg he prescribed it does absolutely nothing. I know I know, I've been lectured about taking more than prescribed but that's what I have to do for it to work. Unfortunately that's the dosage that gets me stoned too.

 

[Shugardrawers]

Hoping a daytime person can provide insite.

 

[MUFFYCAT]

I've been taking Dilantin & Phenobarbital since first siezure at 16. I'm on it now for 29 years with no siezures since 1985 (we tried to lowing the dosage, than went back up to original). The only side effect I really notice is the hair growth.
I have a question for all of you who switched medicines. When switching to a another med, did you have a seizure? My doctor is suggesting I try the newer meds with no side effects. But being that I'm under control for 20 years, I don't want the chance of having an episode.
Now that I'm driving my kids around & commuting to work on the train.
I'm afraid to change.

 

[Shugardrawers]

Just a little update, saw my neuro today. He was going to try yet another med but I said I wanted surgery (I don't take these meds for seizures, I take them for pain). All Docs involved agreed it was ok to proceed and I see the Ortho surgeon on Friday Considering I've been dealing with this for over 3 years now I thought a chorus line of dancing bananas was warranted when surgery was decided on!

 

[LMC]

Well I didn't know tegretol was a pain med. My DH took it for years for brain damage and he needs meds to control emotions that the frontal lobe control which he no longer has. Anyway, he now takes Trileptal and Imipramine. Neither of which I believe are pain meds.

I can only speculate that perhaps you have headaches, neckpain, etc since you see a Neuro and Ortho and now they talk of surgery. (Just sounds like me is all). I take a headache med called MaxAlt if you are having headaches and it works wonders! I also take topamax every nite as a preventative. I went from having horrible headaches every day (two yrs ago) to now having only a few a week. I'll live with this as this problem has plagued me since 1992 and I have finally found some relief!

 

[Shugardrawers]

Actually, I have nerve damage in my leg but thank you for the suggestion. According to my Dr they aren't exactly pain meds, they were just found to help with nerve pain (in which it's the nerve itself that's actually damaged). With any luck we'll have a fast surgery date since wearing pants is agony and it's getting chilly. I'm just relieved there seems to be light at the end of this fog filled Tegretol tunnel.

 

[SetzKitten]

I have nerve damage in my leg but thank you for the suggestion. According to my Dr they aren't exactly pain meds, they were just found to help with nerve pain

I took it for the same reason, I have trigeminal neuralga (nerve damage in my face). It made me loopy and sick and I stopped using it.

 

[Poohlovr]

Setzkitten-
I too have trigeminal neuralgia. For years, tegretol didn't bother me. Then, when I went back on it, after not taking it for 4 yrs or so, it caused me to get stuuupid......

Do you take anything for the pain, now?


Shugardrawers--
YAY!!!! You asserted yourself! Way to go!!!! Best of luck with the surgery and I hope it works.