When my GPN spasms start I have been told by my Doctor to take liquid Tegretol as it starts to work more quickly than the pills. It does stop the pain quite quickly and also the twinges which I get for a few days before the Spasms.
My question is, for how long should I continue taking the drug ?
In the past I have been taking it for nine months and one month depending on the doctor who is advising me. Does anyone just use the drug for a week or fortnight ?
Is it safe to do this ? ( I know you cannot go on and off this drug with epilepsy)
Any advice would be appreciated
I'm not sure - I take the pills daily (three times a day, 200mg a pill) because I get daily pain. I still get some, but it is less frequent and milder.
I guess, since you are getting contradictory info from your doctors (are they both neurologists? I would lean toward following what the neuro says if only one is), but you could try a bit of experimentation and see what happens. Honestly, I think that they are doing a bit of that with each patient anyway, since we all seem to be different.
Good luck!
MOF, thanks for your swift reply. I think you are right - as this condition is so rare few medics can build up a meaningful practise to accumulate much of a data base.
What worries me is that as Tegretol is the only drug that works for me, I don’t want to mess with it. Staying on too long could be lessening the effect and giving me months of unnecessary lethargy - coming of it too soon could get me into a start- stop mode and maybe that would be just as damaging. That is why I would appreciate hearing from fellow sufferers who have been brave enough to experiment. it is also why we have to be so grateful to this web site forum.
Hi dancermom.
I've been on Tegretol for 3 years straight now as I have constant pain rather than attacks. I was told that going on and off it actually reduces its effectiveness and that was from a neurologist. Apparently the more embedded it is in your system the more options you have in terms of being able to up and down the dosage quickly (under supervision obviously) whereas if there's NONE in your system it takes at least 3 weeks for it to embed, hence maybe that's why they recommended the liquid version. A friend of mine with TN only suffers infrequent attacks but maintains a dose of 200mg in his system all the time that way when an attack comes and he has to increase to 800mg, it takes less time to work.
I took Tegretol years ago for my neuralgia. It was causing me memory loss. So I never took it again. I was only in my thirties at the time. So I know it was not age. That was the only drug I was on. I think I was on it a few months. I read about 5 years later that it was a possible side effect of Tegretol.
I am on the liquid Tegretol and have been for at least 1 year possibly 18 months. It has been a God send for me as I have an unusual GPN where I can have daily pain as well as severe fairly frequent attacks . Although it is extremely expensive for me it is worth it, as generics do not do the job. I haven't noticed any substantial memory loss, well possibly a bit of a short term loss, but I would have to think long and hard before I stopped my Tegretol.
Hi Faret, this is a question probably best to ask of your doctor directly. Personally, I'm allergic to Tegretol but still use it for limited periods if I get bad attacks (TN not GPN). I was told by my neuro that doing this does reduce the effectiveness of the drug and its better to maintain constancy. Again though, you should really consult your neuro. or a really good pharmacist - they're usually really good at explaining drugs and how they work. Hope this helps.
Hi Smiley, Thanks for your response. I only need Tegretol in the winter months as my pains are triggered by cold air.
I am concerned that taking Tegretol for longer than is necessary could reduce its effectiveness. Also I do not want to be taking it non stop because of the side effects I get. Hence my query to see if any other members of this community also have a cold weather problem and ask them for how long, or short, a time they take the tablets until they feel safe. I do appreciate the medication issues are different for epileptics.
I'm in the UK and unfortunately there is very little info available from any one about tegretol for neuralgia. I have even spoken to the manufacturer who has not been helpful. It seems to me that the best store of information available is actually on this web site - communicating with other who really do understand TGN.
Smiley said:
Hi Faret, this is a question probably best to ask of your doctor directly. Personally, I'm allergic to Tegretol but still use it for limited periods if I get bad attacks (TN not GPN). I was told by my neuro that doing this does reduce the effectiveness of the drug and its better to maintain constancy. Again though, you should really consult your neuro. or a really good pharmacist - they're usually really good at explaining drugs and how they work. Hope this helps.
HI FARE, MY NAME IS SANDY AND I LIVE IN THE UK ALSO, IN WEYBRIDGE, SURREY. I HAVE BEEN TAKING TEGRETOL FOR 2 YEARS. NOW I DO HAVE SIDE EFFECTS, LOW SODIUM AND SO ON WHICH IS NOT GOOD. I AM LOOKING FOR A SURGEON IN THE UK TO DO AN MVD FOR ME WHICH IS REALLY DIFFICULT AND CAN SEE I MIGHT NEED TO GO TO THE USA. I AM AT THE NATIONAL HOSPITAL FOR NEUROLOGY AND NEUROSURGERY IN QUEENS SQUARE LONDON. ITS ENGLANDS BIGGEST NEUROLOGICAL HOSPITAL . I HAVE BEEN TOLD I AM THE ONLY PATIENT WITH GN THE PROFESSORS ARE LIKELY TO SEE IN THEIR LIFE TIME WITH GN AS ITS SO RARE, WHICH MEANS NONE OF THEM HAVE ANY EXPERIENCE IN THIS CONDITION . HOWEVER THEY HAVE JUST FOUND I HAVE ELONGATED STYLOIDS WHICH MIGHT BE THE CAUSE . ALSO A NERVE IS MAKING CONTACT WITH MY GN NERVE. SO IF YOU WANT TO KNOW THE CAUSES OF YOUR GN PAINS ITS A GOOD PLACE TO GO. REGARDS, SANDY