Tegretol does the trick.ufff

Information about how to manage or reduce the severity of BFS symptoms

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Re: Tegretol does the trick.ufff

Postby fargo on August 12th, 2011, 3:50 pm

If twitching is caused by channelopathy then the most important thing would be to know what causes this. If channelopathy is caused by liver problems for example then taking meds that impact liver would have only short term effects and finally would contribute to more twitching and further problems. If it is hormone imbalances than again hormones should be addressed rather than sodium/potassium channels. If underlying cause is cancer then again blocking sodium channels won't help much. The best solution seems to be to find that balance or work on that balance in holistic terms so to speak :) At least this is what I'm trying to do but I perfectly understand that a pill is a must now and then..
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Re: Tegretol does the trick.ufff

Postby Richard on August 13th, 2011, 8:58 pm

I took Tegretol for a year. It didn't do anything for me. I even tried the dosage, but it didn't change anything.

The Dr. told me that it would take 4-6 weeks for the full effect.

Twitchydoc, glad you found something to help you.

Thanks.
-Richard
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Re: Tegretol does the trick.ufff

Postby Richard on August 13th, 2011, 9:25 pm

Richard wrote:I took Tegretol for a year. It didn't do anything for me. I even tried the dosage, but it didn't change anything.

The Dr. told me that it would take 4-6 weeks for the full effect.

Twitchydoc, glad you found something to help you.

Thanks.
-Richard


Hey one other thought TwitchyDoc. Dr. Thamoush strongly felt that if you can get your BFS under control for 6-8 months, your body will adjust and you could taper off it. In some cases patients with twitching did not come back.

You can probably do some searches for Dr. Thamoush on this web site, for more info.
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Re: Tegretol does the trick.ufff

Postby TwitchyDoc on August 14th, 2011, 3:43 am

RIchard, I would a bit disagree with Dr. saying Tegretol takes weeks to take effect. As mentioned, its sodium blocker in the cell membrane and thus its normal dosage should work immediately after 2-3 days, but I do not know the context your Dr. told you that.
After week, I definitely noticed massive improvement. Twitches are not not gone completely, but its much better.

Fargo: Liver problems are my bet {for me). Its wrong function can cause problems with sodium intake and thus its excessive amount->problems like BFS. I did have increased billirubin and my nails are very pale. I will repeat liver tests next weeks.
The junk food is the worst, there is a lot of salt which we aready have enough from normal food.
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Re: Tegretol does the trick.ufff

Postby luluq07 on August 14th, 2011, 3:23 pm

awesome, thanks for the post... do you know how much it cost over the counter, or do you need a prescription?
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Re: Tegretol does the trick.ufff

Postby TwitchyDoc on August 15th, 2011, 12:12 am

luluq, it depends on the country you live in. Usually these meds are on prescription as they can do serious health damage. But I know that e.g.in Russia you can just buy it..
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Re: Tegretol does the trick.ufff

Postby luluq07 on February 10th, 2012, 10:29 pm

twitchy doc- do u have to be prescribed this or can you get it over the counter?
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Re: Tegretol does the trick.ufff

Postby bobajojo on April 13th, 2013, 7:48 am

Just wanted to give an update on my tegretol experience. I've been on it for 12 weeks now and I'm up to 600mgs a day. At this point, I would say that it has definitely had a positive effect on my lower body twitching. I barely notice the firestorm in my calves and feet anymore. That is to say I just don't feel them. If I look at my legs I can still see fascics, but they are much much slower than before. I used to get several per second in each leg. Now its more like 1 every 5-10 seconds. Sometimes, my calf will stay quiet with no twitches for a minute! BUT, my upper body twitches are off the charts. I feel and see little flickers all over my arms, mostly in my elbows, forearms and triceps. They are twitching when I go to sleep and they are twitching when I wake up. As I type this, I have my sleeves rolled up and I can see the skin just pulsing very quickly in my forearms an my elbows have that subtle rolling twitch... both of them. Its not like one spot either, its all over my arms. Also, my tongue has had a constant twitch on the left side for 3 weeks now. So, after going on tegretol, its like my twitches have moved up my body. I do plan to stick with the med for at least another 5 months and I can go as high as 1200 mgs a day. So I'll report back. Just wanted to share my experience so far. -Matt
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Re: Tegretol does the trick.ufff

Postby mwagner on April 13th, 2013, 11:35 am

Nice to hear Matt, that there is some improvement. But, I would think a med like this would help you entire body, not just portions of it.

Are there any side effects or any benefits (like reduced anxiety)?

Mitra
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Re: Tegretol does the trick.ufff

Postby angelo212 on August 4th, 2013, 2:28 pm

My doctor also told me it would take a couple weeks to see if it worked and if it didn't I would go up in dose. If it's suppose to work in a few days like twitchydoctor said it's not working. I been on it a week.
Gotta love BFS. It's the gift that keeps on giving.
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