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Tegretol does the trick.ufff

PostPosted: August 10th, 2011, 1:43 am
by TwitchyDoc
Well I feel I should create new thread...also really (thanks Msm) after increasing the dosage, tegretol does the trick (knock knock). My twitching is now like 1x per 1-2 hours!

For those who are considering it:
First day: one pill 200 mg
Second day: 3x200mg
Third day: 4x200 mg

That works for me. Hope someone else will be helped as well!

Re: Tegretol does the trick.ufff

PostPosted: August 10th, 2011, 2:07 am
by fargo
Good to know it helps:) Point is , does it really cure you or it just deals with symptoms as in the long run liver problems might be much worse than twiching..
Anyway,I'm glad it works for you and thanks for the info TD :) Could be some people will have success with tegretol while others might find retigabine beneficial..
Keep us updated:)

Re: Tegretol does the trick.ufff

PostPosted: August 10th, 2011, 2:16 am
by TwitchyDoc
Yes, good point. I do not think its cure, I think there is no cure as there is no known cause..just theories about channelopathies. This is just sodium blocker so the membranes are more stabilized but surely it does not solve the instability. But there is documented case of woman with benign fasciculations who had to take Neurontin (gabapentin) for the rest of her life in order to avoid fasciculations caused probably by hyperthyroidism that she experienced (you can look up this article - Benign fasciculations responsible to gabapentin).

Re: Tegretol does the trick.ufff

PostPosted: August 10th, 2011, 3:23 am
by msm
You are right TD the sodium channel blockers like we take, tegretol, and lamictal are membrane stabilizers, and while they may not be a cure, it sure does diminish the symptoms, at least it did mine anyway by at least 98%. That is better than I could have thought was possible two years ago when this started for me. When Potiga, (retigabine, former name) in US comes out on the market (supposedly by this years end) I will ask my doctor if he thinks that it may be even more effective, since it is a potassium channel opener.

Mary

Re: Tegretol does the trick.ufff

PostPosted: August 10th, 2011, 4:38 am
by TwitchyDoc
Well in the morning I experienced like 20 twitches in total, which is very good. The only side effect is very slight vertigo. The hotspot on the knee still remains but its not so pronounced.

Re: Tegretol does the trick.ufff

PostPosted: August 10th, 2011, 12:15 pm
by RandyR
Awesome! I'm going to try to get on this.... :D

Re: Tegretol does the trick.ufff

PostPosted: August 10th, 2011, 12:30 pm
by msm
TD, from what my friend told me this takes a while to truly take effect, at least four to six weeks and continues to get better after that. So there is hope for a good outlook from it.

Mary

Re: Tegretol does the trick.ufff

PostPosted: August 10th, 2011, 4:15 pm
by trajon_34
Twitchy Doc,

I'm curious as to if this decreased your "symptoms" or if this only decreases the twitching. Maybe the two are related or maybe you didn't have any additional symptoms.

Thanks for the insight.

Re: Tegretol does the trick.ufff

PostPosted: August 10th, 2011, 7:13 pm
by msm
trajon, I can't speak for TD but I had cramps, twitching and sensory and the lamictal has helped all of them immensely. These sodium channel blockers help more than the twitching because both motor nerves and sensory nerves which are in a heightened state respond to the membrane stabilizers in them.

Mary

Re: Tegretol does the trick.ufff

PostPosted: August 11th, 2011, 12:19 am
by TwitchyDoc
I have no other symptoms so I cannot say.

God, the dosage 1-1-1-1 works so good! I did not notice ANY twitching last evening and this morning. This is so amazing!

Re: Tegretol does the trick.ufff

PostPosted: August 12th, 2011, 12:04 am
by TwitchyDoc
Just an update:
No more morning twitches after stretching, yesterday I felt like normal person again. As long as Tegretol works, I will not try Trileptal.

Re: Tegretol does the trick.ufff

PostPosted: August 12th, 2011, 6:23 am
by Barbie800
TwitchyDoc wrote:Just an update:
No more morning twitches after stretching, yesterday I felt like normal person again.


I always get the twitches after stretching. I think I am just so used to it that it doesn't bother me anymore.

Re: Tegretol does the trick.ufff

PostPosted: August 12th, 2011, 6:46 am
by fargo
Great news T.D. :)
Let's see if it keeps working at least for a month , I hope it will. I wonder if it would be possible to select a diet towards sodium channels. I don't understand this mechanism yet but if such a diet was possible then one could stop poisoning the liver with meds.

Re: Tegretol does the trick.ufff

PostPosted: August 12th, 2011, 12:33 pm
by wanderer
Great to hear this is working well for you TD. Keep us updated who knows this could be the holy grail for us :mrgreen:

Re: Tegretol does the trick.ufff

PostPosted: August 12th, 2011, 2:51 pm
by trajon_34
Thanks for the update.