I was dx with tn 12 November on carbamazepine 100mg 3 times a day still incredibly painful I’m tired takes ages to do task that should take mins asking for help feels like talking to brick wall just about had enough I’m not sure that I can struggle on never knowing when it going to explode in my head I’ve got rr ms as well I really don’t think anyone who has felt this pain understands how it can bring you to your knees I can’t eat sleep clean my teeth I’ve even had my hair cut really short so it doesn’t flap on my face and set it off I’m crying at the slightest thing just really had enough
I hear ya! Im literally breaking down myself and for the first time in my life thought about cutting my long hair just so I don't have to deal with it! Have you ever tried chiropractic? I do it and it helps me I know that montel williams has ms and he does upper cervical. maybe do some research though I don't have typical TN i've been told I just have AFP not sure yet
That is a low dose of carbamazepine. That is what they started me on, except 2x a day, but they had me increase it within a week to 200mg 2x a day. I am now up to 400mg 2x a day and it controls mine pretty well. I think you need to see if it's time to increase because you have been on it a week now. Ask your doc............immediately! Hugs and prayers to you!
I had to ask my Dr. for Ritalin - my neurologist said that he prescribed it for many who need energy and focus – but would not continually give it to me - I just used as needed.
You can also ask for lidocaine patches - they help the pain ALOT for many people. Put it on your face, if the inside of your mouth hurts you can also get a mouthwash with lidocaine - these are both prescription.
Thank for all so much for replying I’m Definately going to be on at my gp first thing although I don’t have much faith in my gp I’m taking carbamazepine and he’s already give me tramadol and ethromycin both should not be taken with carbamazepine but I’m so glad I found this site just knowing someone else knows how horrendous this is really helps
tedgritol can have aweful side effects like weight gain,going bald,extreme fatigue and can possibly screw up your liver function.Im not tring to scare you ,for some people the benefits the risks.
newton1068 said:
Tedgritol i believe is the brand name. This medication can have aweful side effects like weight gain,thining hair,extreme fatigue and can possibly screw up your liver function.Im not tring to scare you ,for some people the benefits outweigh the risks. I personally felt aweful and was so tired on this med.I hated every minute of it.Just make sure you make an informed decision. Good pain control can make all the difference.I know its so hard sometimes.