Hi there...glad to be here! I was first diagnosed with MS in 1993 and have been in remission until 2007. In February of 2007 I was diagnosed with Paratrigeminal Neuralgia (Raeder's Syndrome) not to be confused with Trigeminal Neuralgia.

I have been on Tegretol 400mg for about 13 years and my dosage has been increased to 1200mg/day for about 6 months. I have also been on Neurontin 1600mg/day for about 6 months.

I have been experiencing symptoms somewhat similar to those of an MS relapse but my new neurologist says that my old neurologist has been overmedicating me and the combination of the two drugs is what has been causing my symptoms.

These symptoms include pain in legs and hands, muscle spasms in legs, neuropathic pain in legs and feet, Dysarthria (difficulty with speech), problems with equilibrium, extreme fatigue, severe vertical double vision, eyesight deterioration (which Opthamologist believes is related to MS).

I was originally given these meds to help combat the head pain from the Paratrigeminal Neuralgia and since my neuro has decreased the dosage, the pain in my head has increased but I have been told that giving me any other meds for my pain would "defeat the purpose" of weaning me off of the Tegretol and Neurontin. I have been told to live with the pain!

Is there anyone else out there that has had such problems with Tegretol and Neurontin? It did help with the pain in my head and I am still having "neurologic symptoms" even though my dosage has been lowered and it has been 1 month today.

I was under the "care" of a different neuro which prescribed the Tegretol and Neurontin and when the pain would increase or I would have a new symptom he would just increase my dosage!

Help me Please...I am feeling alone not only because of the fact that I have yet to find anyone with Paratrigeminal Neuralgia to exchange facts with but I have been thrown to the wolves so to speak in that my new neuro won't give me anything for the pain that is still very real!

Pairoftrigeminal