Getting off Tegretol-need advice

[AshleyChristina]

My Dr has me on carbatrol, however the carbatrol only controlled my grand mal seizures. He placed me on lamictal a few months ago, slowly increasing as he attempted to decrease my carbatrol. It didn't work at all. My body will not respond to the switch of any other medication except carbatrol. I've been on it for 15 years and even the smallest decrease sent me into seizures. And the scary part for me is they can't decrease, yet I'm pregnant. I'm currently taking 600 mg of carbatrol daily and 450 mg of lamictal and the lamictal has helped wonders with my partial seizures, but does nothing even remotely close to controlling a grand mal for me.

 

[PSUgirl2009]

I was on Tegretol for 21 years. When we decided we wanted to get pregnant, I switched to lamictal. They first weaned up 50mg at a time of Lamictal (keeping me on my original dose of Tegretol). Once th Lamictal was at the dosage they wanted, they weaned off of Tegretol 200mg at a time. It took about 4 months.

 

[forward2007]

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.

One quick correction: It was actually HIGH blood sugar that was making me have seizures back then. If I control my blood sugar I am fine.

 

[amparris18]

Your situation is very close to mine. Sugar, msg, processed food, fake sugar and huge amounts of stress cause my seizures to flare. My addreanl glands were shot. If I eat clean, organic, no sugar, no msg, no fast food no diet soda, no caffeine. My seizures stay in check. Our bodies have a defense mechanism that protects us from these horrible toxins so we have a seizure due to the abnormal fire of certain neurons in our brain. (this is my opinion though my own trial and error and reading) Read the book Exocitotoxins the tastes the kills and look up how msg affects your brain. You will be amazed. It is about respecting your body chemistry and keeping it clean from the toxins in our horrible food supply.
'
My seizures began when I started weight watches and started eating "diet food" Tv dinner, canned soup, diet soda. All full of MSG and preservatives. I also have a methy folate gene defect meaning I am not able to break down folate properly so I take a supplement which is in its more broken down form. I suggest getting checked for that gene defect. It can cause brain issues.

Doctors just keep upping the drugs and damaging our internal organs. There is a healthy alternative. Eat clean. Use Ativan as a emergency it what I am going to do. Or at least take a food journal and see how certain foods affect you.

Alisa

 

[crystalbay]

I apologize for using this thread to ask a very important question: how can I post anything on this site???? I see no field for "starting a conversation" or otherwise posting anything, so I'm resorting to the "Reply" function of this thread to get help!!!

 

[forward2007]

Your situation is very close to mine. Sugar, msg, processed food, fake sugar and huge amounts of stress cause my seizures to flare. My addreanl glands were shot. If I eat clean, organic, no sugar, no msg, no fast food no diet soda, no caffeine. My seizures stay in check. Our bodies have a defense mechanism that protects us from these horrible toxins so we have a seizure due to the abnormal fire of certain neurons in our brain. (this is my opinion though my own trial and error and reading) Read the book Exocitotoxins the tastes the kills and look up how msg affects your brain. You will be amazed. It is about respecting your body chemistry and keeping it clean from the toxins in our horrible food supply.
'
My seizures began when I started weight watches and started eating "diet food" Tv dinner, canned soup, diet soda. All full of MSG and preservatives. I also have a methy folate gene defect meaning I am not able to break down folate properly so I take a supplement which is in its more broken down form. I suggest getting checked for that gene defect. It can cause brain issues.

Doctors just keep upping the drugs and damaging our internal organs. There is a healthy alternative. Eat clean. Use Ativan as a emergency it what I am going to do. Or at least take a food journal and see how certain foods affect you.

Alisa

I had adrenal fatigue too. It caused insulin resistance. A book on adrenal fatigue said to drink water with sea salt in it. The salt actually tastes good. That's how you know if you need it or not. You can also get ground adrenal glands from pigs at vitamin stores. It definitely helped. Dr's can give you a RX for hydrocortisone. The oral kind. It is the same as cortisal and does the same thing the ground adrenal glands would do but you have a Dr that can keep an eyes on it better than pills from a vitamin store.

 

[kirsten]

I was forced to stop tegretol after two years without any weaning because I developed hyponatremia. Although I was feeling very ill--I had encephalopathy--coming off the tegretol so quickly didn't seem to make me feel any worse than I did already. Of course, if you are not needing to stop the tegretol urgently they will wean you but my experience does say something about the ease with which you might experience the change. It isn't a physically addictive drug and I certainly experienced fewer withdrawal symptoms than I do with others in its class.

 

[CQ:)]

I was on Tegretol for 11 years, started taking it in 2002 when my seizures returned.
In March last year when I saw my neurologist at the epilesy clinic we were able to discuss me coming of one of my meds (at the time I was on 400mg Tegretol AM/PM & 1000mg Keppra AM/PM) because my seizures were under control & I had been seizure free for 12 months.

We decided to take me of the Tegretol because my neurologist felt it had more long term side effects then Keppra (possible because it was an older med) but we did it really slowly.
My neurologist started me of by reducing my doseage of Tegretol from 400mg twice a day to 200mg twice a day, I was supposed to stay on that dose for 6 months but when I saw my neurologist at the epilepsy clinic in September last year I was under a lot of stress which was affecting my health so he decided not to alter my meds until I got my stress under control.

I went back to my neurologist at the epilepsy clinic in March this year, I was still seizure free & I had gotten my stress levels done low again. We were able to disvuss the final stages of getting me of the Tegretol, he dropped my AM dosage (200mg) of Tegretol but kept me on the PM (200mg) dosage for a month & told me that I could stop the PM dosage after 4 weeks. I came of the PM dosage at the end of April & am now on just Keppra.

 

[nicholas:)]

CQ, do you think you will come off of Keppra, and does it concern you if this was to happen? Basically, do you think you can become meds free and seizure free?

 

[CQ:)]

CQ, do you think you will come off of Keppra, and does it concern you if this was to happen? Basically, do you think you can become meds free and seizure free?

Nich,
I will probably be on 1 med for the rest of my life, which will most likely be Keppra but eventually at a much lower dose.

When I 1st looked into having the surgery I was told by the epiologists that f I was to have the surgery & it did help control my seizures I would most likely still be on med for the rest of my life but eventually a much lower dose. Before my surgery I was on 3 meds, so their goal was to get me on 1 med which they have done.

I am not to worried about still being on meds because I don't really have any side effects on Keppra. When I saw my neurologist at the epilepsy clinic in March he was happy to get me of the Tegretol & keep me on the same dose of Keppra for now. I don't go back to the epilepsy until next year so won't know until then whether my Keppra will be reduced.