Patient Comments: Trigeminal Neuralgia - Experience

Please describe your experience with trigeminal neuralgia.

Comment from: Ann M, 55-64 Female (Patient) Published: September 27

I am 59 years old and have had trigeminal neuralgia (TGN) since I was 17, right before my 18th birthday. When I was 20 I had my first brain surgery. Four months later the pain came back. I was on Tegretol for years but only when I had a flare up. Over the years the pain got worse and I needed surgery again. In April of 2005 I had surgery. It fixed the pain for over a year. Then it came back. I tried Dilantin, couldn't take that because of the side effect. Then tried Trileptal and finally something worked. It worked for quite a while then the pain came back again. Then my brain surgeon suggested radiation. By the time I finally got to it, the pain was bad. After radiation, the pain came back. Doctors would no longer see me. They told me to go somewhere else. It was excruciating so I went to the emergency room and the doctor on call met me at the door and said the same thing but gave me information on pain management facilities. I had many steroid shots in the face but they never worked until the last one and then they hit the nerve. The pain from hitting that nerve was excruciating. With no pain medications it became hard to tolerate. The pain finally went away and was gone for 2 years but now it is back. I am taking five 300 mg Trileptal a day now and I still have the pain. I have it in my eye and forehead area and my sinus area and cannot move my jaw backwards or my tongue to the side. Eating is difficult and sometimes drinking water is impossible. I have realized now that my sinus plays a big role in triggering this pain. It always bothers me when I'm congested and taking decongestants helps a lot. My jaw muscles swell and moving my jaw backwards will trigger that pain. Over the years I have learned a lot about this nerve disorder and it seems like every time I have a flare up I learn something new. All I can say is never give up. There could very well be an answer to the relief of some of you.

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Comment from: MERNO, 55-64 Female (Patient) Published: June 23

I had a botched root canal done last year and suddenly had electric shocks down the whole right side of my face. The endodontist slammed a needle up into the roof of my mouth and I am sure this is what triggered my trigeminal neuralgia. I did very well on Lyrica and in 3 months it was gone. But it has reappeared after two things happened, one a tooth cleaning where my mouth was open for a long time, and an endoscopy 3 days later where I was told to bite down on a large piece of plastic and this kept my mouth and jaw open. I believe it is triggered by anything that requires me to keep my jaw and mouth open for a long period of time. I had planned on implants for some teeth but will not take the chance now! So many people have teeth removed thinking this is teeth related.

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Comment from: cagon, 45-54 Female (Patient) Published: June 06

I have been suffering with trigeminal neuralgia for a couple of years. I feel this started when I had a bad experience with a wisdom tooth extraction. After a couple of years of off and on, again pain started. This soon became pain all the time. I was taking 1200 mg a day of Tegretol. It took care of the pain but I could not think straight. I had a radiofrequency lesioning done as I was afraid of gamma knife and of the big brain surgery. So far it has been 2 months pain free and no more medicines. I have some jaw weakness, some days I speak better, and on others I need to concentrate and sound legible and I have constant burning in the mouth. But overall I am ok, a little pain.

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Comment from: Jim B, 65-74 Male (Patient) Published: August 27

My trigeminal neuralgia started about 5 years ago. If my general physician had not controlled it I would have ended my life. It goes into remission for long periods without medication but now it has returned after 18 months. I am restarting the medication today. I found gabapentin works best for me. I just have to live with the condition; other people are worse off.

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Comment from: Roselyne, 55-64 Female (Patient) Published: August 11

I have been suffering from trigeminal neuralgia since 2007. I have shooting pain from time to time. I am under Tegretol 200 mg (4 per day). Medication was working, then included Lyrica 25 mg under the advice of a maxillofacial doctor. This worked until Lyrica was out of stock in my country and I relapsed having shooting pains mostly every day. I am dizzy, in very poor condition as I have other medications as well. Neurologist advised treatment at Chennai, India. I am looking for the best experienced neurologist in this field. One physician told me about one new medicine far better than Tegretol available in India, Trileptal 150 or 300, but not been able to have more information about it.

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Trigeminal Neuralgia - Causes Question: What was the cause of the trigeminal neuralgia you suffered?
Trigeminal Neuralgia - Symptoms Question: What were your symptoms of trigeminal neuralgia?
Trigeminal Neuralgia - Treatment Question: What treatments were effective for your case of trigeminal neuralgia?

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