Getting off Tegretol-need advice

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forward2007

forward2007

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Has anyone here taken Tegretol for a long time and then switched to another med and then stopped taking Tegretol? At what rate did you reduce your Tegretol dose before you were no longer taking it?

I have been on Tegretol/Tegretol XR for 20+ years. I think the Tegretol made my Testosterone levels crash and also may have given me Hypothyroidism. I am currently taking 700mg of Tegretol both AM and PM as well as 200 mg of Lamictal AM. I want to switch to only taking 200 mg Lamictal both AM and PM. I want to see if my Testosterone and Thyroid return to normal after getting off the Tegretol.
 
My wife's doc ramped up her Lamictal first, then weened her off the Tegretol. it's about a 4-5 month process.
 
I was in a similar situation (however I am a 33 year old female).

I was on Tegretol for 18 years (brand name for 7 years and generic for 11).

I became complacent with the side effects of the Tegretol because I was virtually seizure free.

I began having seizures after 18 years when the pharmacy made a switch on me(there happened to be less bioavailability in the generic brand) and I ended up having myoclonic seizures 24-7 for 2 weeks straght, finally culminating in a grand mal seizure because my neurologist boosted up the Tegretol to 1000 mgs.

It turned out to be I guess a blessing in disguise. I am now on Keppra.

I continued to take a low dosage of tegretol (200mgs twice a day)for about two months, After those two months I took 200mgs for two weeks and now I am on only generic Keppra (500 mgs twice a day). (There was no seizure avctivity during this time)

I was seizure free up until a week ago Friday when I experienced the worst grand mal seizure I have ever had. So, wating for neurologist appointment next week to see what happens.

For years my somewhat negligent (perhaps ignorant) neurologist instilled a lot of fear in me about switching from Tegretol, once I saw a more prominent and contemporary and aware neurologist, he explained that Keppra can be used in conjunction with Tegretol, so there would be no loss of license, no hospitalization, no blood work, blah blah blah....

Now on 1000 mgs of generic keppra a day, my side effects are: depression, hostility, anger, short temperedness, some paranoia, sometimes a little different outlook than before, extreme intense numbness in my hands, overreacting, and now a breakthrough seizure... but at least my liver is safe.

(Not as though the Tegretol side effects were any better or worse, but on Tegretol when my levels were right I never had a breakthrough seizure and I think it somehow leveled off my moods. I do not miss the lethargy, dizziness, spaciness, sluggishness. I also believe that the Tegretol may have left me with permanent damage.)

Since starting the Keppra I also developed shingles....not sure if there is a connection.

What is your Dr planning on prescribing for you instead of Tegretol?

Good luck, and a second opinion form another neurologist never hurt...just wish I'd take my own advice!
 
I was on Tegretol for about 4 yrs when my neuro finally took me up to the max dose on it (my levels were always low and sez control was minimal). The side-effects were so bad that I called him nearly in tears. I was falling down, running into walls, listing to one side when I walked, headaches so bad I thought my eyeballs would explode, etc. He pulled me off of it straightaway and put me on 300 mg trileptal. There was no ramping down of the tegretol at all. I had to start the ramp up process all over again with the trileptal but at least the tegretol was gone (TG!).
 
Zoofemme said:
I was on Tegretol for about 4 yrs when my neuro finally took me up to the max dose on it (my levels were always low and sez control was minimal). The side-effects were so bad that I called him nearly in tears. I was falling down, running into walls, listing to one side when I walked, headaches so bad I thought my eyeballs would explode, etc. He pulled me off of it straightaway and put me on 300 mg trileptal. There was no ramping down of the tegretol at all. I had to start the ramp up process all over again with the trileptal but at least the tegretol was gone (TG!).
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That sounds scary! I've been on Tegretol so long I don't know what side effects would go away once I quit taking it.
 
That is the problem with most of the meds...after a while you don't remember what it was like NOT to be on them, lol. I didn't remember how long I had been having memory problems until my rheumatologist asked to really think about it and I realized that it had been BEFORE I had switched to my new meds. Granted, it is far worse now but when the realization hit that it had been going on longer it actually scared me. If I can't blame my meds then what?

Hopefully your going off Tegretol will address the issues you want it to though. I've read on other boards guys having problems with it causing low T and other issues. Some women have desire issues with it too :(
 
So far I've only dropped 200 mg of the 600 mg nightly dose. I am still taking 600 mg in the day. I was already on 200 mg of Lamictal in the day and just added 50 mg for night. I'm going to go up to 200 mg at night too. It's going to take 8 months to get off the Tegretol.
 
8 months sounds right. My wife wasn't taking as much Tegretol as you were. It was something around 3-400 a day. Tegretol and Lamictal don't play together well. I hope your doc will get a base line Lamictal level once you're Tegretol free. I've said this before, but my wife had a vicious cycle going on. Tegretol ate Lamictal and Birth Control. Had to be on a higher dose of Birth Control. That same Birth Control was eating the Lamictal. So really she was just popping Lamictal for fun because it wasn't doing anything for her.
 
Well, I can tell you what it feels like to be off e meds (And not on anything else). I was off it for 2 years. About 1 1/2 years med free I had to sit myself down in a chair and hold on to the arms, I was so happy and I felt so good. I now know what it feels like to be med free. However, that trial didn't work and back on it I went. I hope things go well and you feel better once the switch is made completely.
 
So much for getting off the Tegretol. I was taking 800 mg of Tegretol XR a day and 400 mg of generic Lamictal a day for several months. I was having simple partial seizures once and a while during that time but to be honest, I didn't totally realize they were seizures. I wasn't losing comnciousness and could never find info on simple partial seizures that really matched what mine are like. Last week I had a big partial complex seizure where I lost conciousness. Before my Hypothyroidism was diagnosed and I started getting treated for it, even 1400 mg a day of Tegretol XR didn't control the seizures becuase my blood sugar crashed too easily. When I dropped the Tegretol dose, I guess I was in denial hoping the 400 mg a day of generic Lamictal would control the seizures. I had been told in one way or another that Lamictal was the new wonder seizure drug. I have a feeling it doesn't really help me. After the partial complex seizure last week, I went back to 1200 mg of Tegretol XR a day and 400 mg of geveric Lamictal a day. I only had one of what I think was a simple partial seizure (it only lasts 5 seconds or so and there is no loss of conciousness. I could still hold a conversation if someone asked me a question). There have been no more complex partial seizures. I am going to see how it goes for the next month and am hoping the 1200 mg of tegretol XR and 400 mg of Lamictal a day is enough. If I have to, I will go back to 1300 mg or 1400 mg a day of the Tegretol XR. I think the only reason the Tegretol started working again is because my Hypothyroidism is being treated and I am taking DHEA for adrenal fatigue. It's just crazy to go from needing only 800 or 1000 mg a day of Tegretol for 20 years to needing Tegretol XR, Lamictal, Synthroid, DHEA, and Magnesium.
 
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forward2007 said:
Has anyone here taken Tegretol for a long time and then switched to another med and then stopped taking Tegretol? At what rate did you reduce your Tegretol dose before you were no longer taking it?

I have been on Tegretol/Tegretol XR for 20+ years. I think the Tegretol made my Testosterone levels crash and also may have given me Hypothyroidism. I am currently taking 700mg of Tegretol both AM and PM as well as 200 mg of Lamictal AM. I want to switch to only taking 200 mg Lamictal both AM and PM. I want to see if my Testosterone and Thyroid return to normal after getting off the Tegretol.
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700mg x2 /day? Wow. That's a hellishly high dosage. You must be flying in space.

I'm very lost on my current dosage. I'm about to try switching to lamictal like you have. I've got this same idea you mentioned, that it could be the "miracle pill". I guess we will see what happens...
 
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Plan B is to stay on 500mg a day of Lamictal as well as the 1200mg a day of Tegretol XR while starting Vimpat. Either during the ramping up of Vimpat or after reaching the 400mg a day dose I will start reducing and eventually be off of Tegretol XR.


When I previously dropped my Tegretol XR from 1200mg to 800mg and was also taking 400mg of Lamictal, I was having simple partial seizures that I wasn't having while taking the 1200mg of Tegretol XR and 400mg of Lamictal.

In other words, while taking the 800mg of Tegretol XR and 400mg of Lamictal, the Lamictal was not controlling the seizures. My Lamictal serum was at 2.7 at the time went up to 4.4 when I raised the Lamictal to 500mg a day.

I am wondering if once I have reached the full dose of Vimpat and start dropping the dose of Tegretol XR, will the Lamictal help control the seizures more than when I was still taking 800mg of Tegretol XR once I am totally off of the Tegretol. Obviously the Vimpat will have to do most of the work controlling the seizures while reducing the Tegretol dose.

I can't tell if the Lamictal serum wasn't high enough to work while on 800 mg of Tegretol XR or if Lamictal simply doesn't work for me.
 
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I am now officially off of Tegretol. Vimpat has worked just as well if not better than Tegretol has in the last 4 years. Now to just get the Thyroid and Testosterone in tune.
 
forward2007 said:
I am now officially off of Tegretol. Vimpat has worked just as well if not better than Tegretol has in the last 4 years. Now to just get the Thyroid and Testosterone in tune.
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Yaaaayyy.:banana:

Congratulations on finding something better. Hopefully it will make it easier to balance your organs.
 
I'm glad the Vimpat is working for you! :)

I was on Carbatrol ER (another form of Tegratrol XR) for over 12 years. In March, i went in for my first VEEG, and after having alot of simple partial seizures, I was put back on Keppra XR, I was taking that with the Carbatrol ER for over 12 years together with really good control over my seizures. My doctor wanted me to get off the Carbatrol ER because if left on it for too long, it can cause health problems. Since I had simple partial seizures, and not any grand mal seizures, he felt comfortable putting me on the Keppra XR and not putting me back on the Carbatrol ER. Even if I would have had grand mal seizures, he said he would have replaced the Carbatrol ER with Vimpat. About a few weeks after having the VEEG, I did have some break through seizures, and he tried me on the Vimpat, but didnt have a good experience with it. Made me depressed and not myself at all. I was off of that, and tried Lamictal, which I had an allergic reaction to it. Since then, Ive been on Keppra XR only. So far, the only seizures that occured was when I was put on some gerd medication and hydroco medication, combined the two of them wasnt a good mix at all. I havnt had any seizures since thanksgiving.

I hope all goes well with you and the medications works! :)
 
My boyfriend was on Tegretol for 10 years his Dr switched him to Keppra and after 2 months his seizures were worse than ever. After doing research we learned that Keppra (while is has less long ter side effects) can cause more seizures in 10% of patients who take it. He is back on tegretol xr and is doing much better maybe 3-4 grand mal seizures a year as opposed to a month.
 
The Doctor is weaning me off of Tegretol, I was on 800mg a day now down to 600mg - Jan 12th I see her again and I'm expecting her to reduce me by another 200mg and so on monthly until I'm free of them. The Tegretol has been replaced by Clonazepam. At the moment I'm clumsy and drowsy most of the time - or sleeping!

Nick
:)
 
everyone on here seems to get help stright away with changing meds ive tryed to get off tegretol for years.... ive cried at the nero, ive wrote down how i feel every day .... the side effects are so bad! but no1 will help instead the added keppra and didnt bring down the tegretol silly idiots grrrrrr
 
Most important thing I can share is get your Vitamin D checked ASAP. Tegretol lowers it and dropped mine to 19. This vitamin is so important for our bodies and I am upset that no none of my doctors ever checked it in the
whole 10 years I have been on this drug. Low Vitamin D can actually cause seizures and muscles cramps and even linked to hair loss. Not to mention this drug can affect your bad LDL cholesterol. Please research on the web and you will find the info. I have stopped taking tegretol and have switched to Keppra XR and am now taking Vit D. It will take a while to get it up but I am hoping my break through seizures will end! Best of luck to all of you!
 
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