These comments are made for the purpose of discussion and should NOT be used as recommendations for or against therapies or other treatments. An individual patient is always advised to consult their own physician.
[posted 01/21/2000]
Question: I was diagnosed with TN July 1999. I have been a very healthy and active outdoors type person, rarely ill, rarely take meds. Except for migraine headaches occasionally (5-6 times yrly). For the TN I was put on 600mg daily of Tegretol. Not a very high dosage I realize, but it controls the pains quite well (about 75-80%) although the side effects have been very bad. The side effects have interfered drastically with my job (I lost it). Short-term memory loss being the worst, then also dizziness, dropping things, nausea, severe fatigue among them. Severe vision problems since diagnosis – blurred & double vision and vision deterioration (my eye specialist is working in conjuction with my neuro). My doctor wants to take me off the Tegretol completely (because of the side effects being so prevelant) and try me on Neurontin. I have read all your FAQ’s on Neurontin. My question is: What is your opinion regarding Neurontin for TN. Do you think it will control the “shocks” as well as Tegretol or should I maybe consider asking my doctor if I could take a lower dosage of Tegretol along with the Neurontin? I have read about some of the side effects of Neurontin and they don’t seem as severe as the Tegretol. I have not started the Neurontin yet – am supposed to do so next week. I would appreciate your opinion on this and I thank you for your time.
Answer: I’d try the Neurontin. It may not work, but you’ll know pretty quickly. Also, if this does not work a pain clinic can block the pain by destroying the nerve causing the trouble. This is not without problems either, but an option considering your side effects. The side effects of Neurontin are usually pretty minimal-especially compared to tegretol
[posted 11/23/1999]
Question: Had bad sinus infection a year ago. It resolved but facial pain stayed and never went away. Was on Neurontin. Changed to Tegretol 7 months ago. Now going on time released Tregretol – 800 mg a day. QUESTION: I have had a sensation of facial heat for the past eight months. Is this symptom known to be related to trigeminal neuralgia?? Or what? If I am on 800 mg of Tegretol now, and had failed Neurontin, if I get used to Tegretol, will I have to live in pain again?? Scary thought.
Answer: Usually tegretol will continue to work and you won’t develop tolerance if the blood levels are maintained. The facial heat is probably the neuralgia.
[posted 08/9/1999]
Question: I am using Carbamazepine 200 mg – 3 tablets a day since
September 1997.
Is there any other alternative medicine to cure Trimenal
Neuralgia pain.
Answer: This is the first place to start and usually works, if your blood levels are where they need to be. Have these been checked? Dilantin is sometimes of help or seeing a pain specialist for ablation of the nerve itself.
Trigeminal Neuralgia
Question: What is the current therapy approach for (facial) trigeminal neuralgia?
Answer: Trigeminal Neuralgia refers to the pain secondary to irritation or stimulation of the facial
nerve which goes to the lower half of the face. This is also called Tic Douloureux. This
syndrome is usually seen after age 30. It is extreme pain, usually to the lips and
cheek. There tend to be recurring waves of pain usually lasting less than 1-2 minutes. This
can be triggered by seemingly simple things like a breeze on the cheek. Indeed, light touch
often sets this off, whereas heavy stimulation does not.
There are several ways to treat this pain. Initially, drugs are used. Tegretol(carbazepine)
is usually given first. If this is not successful dilantin(phenytoin) is used. If drugs are not
Successful, radiofrequency ablation (also called percutaneous retrogasserian rhizotomy) is used.
Occasionally, injection of glycerol or something similar is used in place of the radiofrequency
ablation. This surgical approach will give numbness to the face in the affected area. This
pain can occasionally reoccur after surgery in 20 % of patients.
