I have been taking Carbarzepine now since 2008 . More pain and 1000 mg is not doing it no more. Dr. Has upped my medication to 1200 mg. I don’t think I can handle that much more medication.
I too have had TN since 2008 and was started on Carbamizipine. I was on 8x100mg per day, and till having pain. I developed double vision, very poor balance, unable to think straight, and more. My gp continued to prescribe it despite these problems. It took a locum gp to recognise that it was the Carbamazipine that was causing all these side effects. He got me an urgent appointment at the hospital neurological department. I was immediately admitted and weaned off the C,and put on Lamotrigine/Lactil. I was very quickly back to ‘normal’ though still having severe pain so I was also prescribed Tramodol 100mg, up to 4 per day as required. I am now waiting for an operation, hopefully very soon) I am 69 and really don’t want to live the rest of my life in pain, so despite the possible serious complications I want to go ahead. Perhaps I was unlucky but if start to develop side effects go back to your doctor and keep on at them. Good luck!
I AM ON 1200 MG . I started in 2008 @ 200 mg . AND I have built a intolarence to the medication. I was tried on gabatin. But I got nose bleeds. So I was stopped and still on just carbarzepine. I have lesion from my MS in my celeabreum. And in spine. No surgery there. Right now I am having shocks episodes in my face two to three times a day. Feeling very sick.
I take 200 mg in the morning with 75 mg Lyrica and repeat it at dinner. It keeps my pain generally around a 3-4 on 1-10.
I have a resultant memory problem. Most people do. The week your off, your memory returns to normal. I have learned to live with it and so has my family and friends.
You must have a blood check quarterly while on it.
I tried Lyrics my body could not handle it. So far seems by body can’t handle any other medications.
Good Morning, I was struck with TN in April 2012. I have been on the same dose since with the only change being a switch to slow release. I have found the slow release works better for me. I am taking 800 mg daily as well as 40 mg of Baclofen. It’s a baby dose but my sodium issues don’t allow for an increase.
WARNING: Carbarzepine sapped all the sodium from my system. I ended up in the hospital with Hyponatremia. They stopped the Carbarzepine (Tegretol or Trileptal) while I was in the hospital and the pain was reduced by at least 60%. I now chew gum all day and it helps a lot, but the nights are still terrible.
I have had TN-1 since 1995. Got up to 1000mg/day and went for a MVD. Immediately pain free and off drugs in a few days. However, pain returned after 4 years. Back to Tegretol, Baclofen and Neurontin. At its worst I was up to 1500mg/day of Tegertol, 30mg/day of Baclofen and 1800mg/day of Neurontin. Around 11-12 years ago I suddenly went into remission. Have been since with a few minor flares. Off all meds but I take 5000micrograms of V-B12, sub lingually every day. I believe the B-12 is helping to keep me in remission by helping to repair the myelin. Tegretol at 1500mg was the absolute upper limit for mew. Was OK below that but started feeling out of it at 1500.
I took 400 mg / day. the side effects were awful so I switched to gabapentin. did not find that quite as effective, but less side effects.
Saw the Dr. Yesterday and he took a carbarzepine level test and he said He is thinking of adding gabapentin This 1200mg is harsh on the body and still have lots of facial shocks.
Tramadol won’t help with the pain. Opiates don’t help with nerve pain and will only spiral you into addiction.
I was diagnosed last year and was on 800 mg carb a day with another 800 mg of gabapentin. Those meds are also addictive and I sought out MVD surgery. MVD was successful immediately, but 8 months later I have had a recurrence of pain, but not nearly as bad as it was prior to the surgery. So, right now, I just suck up the pain because it is infrequent and lower on the pain scale than before.