Has anyone tried GABAPENTIN or PRIMIDONE or CARBAMAZEPINE?
i have BMS and Lyrica is so expensive

Ciclamino

I am currently trying the Neurontin (GABAPENTIN) route. It is an inexpensive drug. I am ramping up to 900 mg/day; apparently I can go up to 3,600 mg if necessary. I feel sleepy with the neurontin, but Lyrica made me narcoleptic... I could not take the side effects at all.

Mere

Dear Silverlady:

It has been 4 years since you wrote this on the forum. Are you still experiencing the same problems? If not, what have you done to relieve this terrible problem.

I read the link and this is what I seem to have and have had the same problems for 3-4 years now and it seems worse. Everday I go through this terrible burning in my mouth, which includes my tongue, gums and lips. It seems to be mostly on the left side and is in my cheek also, but it is a different feeling in my cheek, which sometimes feels like it goes from my eye down to my neck, but mostly times in my cheek.

I am taking 100 mg.'s of Carbamazepine 4x's per day which may help, but I am not sure. I tried taking more, but I was getting a dopey feeling and didn't think I should be driving.

Is there no relief to be found?

Alandale815

Hi, Billye -


I referenced an abstract in a post here a few weeks ago that was written by the Cleveland Clinic neurologist who did my skin punch biopsies and found non-length dependent small fiber neuropathy. The abstract explains SFN better than any other piece I've read. It actually says that there are three causes for this type - one of which is Sjogren's, and I don't have the other two as evidenced by testing.

The abstract says that mouth/lips burning can absolutely be a component of SFN, so if you have it - I'd bet that's the cause. I have it, too, and in the absence of everything else, believe that's what causes mine. Certain foods would exacerbate it, but it didn't last it would quickly stop.

Oddly enough, haven't had this for days now. Don't know why, except that the general discomfort (skin sensations) have also diminished at the same time - not gone, but diminished.

Am doing only some of the supplements recommended at this forum, and no Rx meds whatsoever except the levo for thyroid and pilocarpine to stimulate saliva and tear production (Dx'd clinically withSjogren's although unsupported by bloodwork/lip biopsy).

Sheltiemom

Has anyone with BMS tried glosso? also, would love some support with it, that would be wonderful!! thanks!!

Hi- I am new to this...please help.....has anybody had sucsess with lyrica and if so at what dosage...plus any tricks for rlief of burning outter lips?? please help, thanks!!

new here, does anyone know of a trick to help burning outer lips....anything????? also, does anyone tried lyrica and at what dose? thanks....very worried!!

I've had burning mouth syndrome a couple of times in the last year and too Diflucan for a week and it went away. Even though my mouth didn't have the classic Thrush look, my dentist still tried treating it like a yeast infection, and the Diflucan worked both times I tried it.

Help any tricks to relieve a little for mouth and lips?????

jannaw- did the lyrica ened up helping? thanks!!