Patient Comments: Trigeminal Neuralgia - Experience

Please describe your experience with trigeminal neuralgia.

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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Comment from: YankeeGirl, 55-64 Female (Patient) Published: August 06

This is my third time with trigeminal neuralgia (TN). The first two times, I experienced shooting shock like pain in all three parts of the nerve. This time, nothing in the jaw area, though it feels a bit numb. It doesn't bother me at all when I sleep, but turns on the moment I wake up. Shooting pains, like lightning strikes in my temple/eye area, and ear area. I grimace and tic. Last two times, it went away by itself. This time, I was experiencing headaches, which I rarely get, for at least a week before the strikes. I also have RLS (restless legs syndrome), so neuropathy is my cross to bear. TN is a tough row to hoe.

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Comment from: Ellenmarie60, 55-64 Female (Patient) Published: October 06

I have burning pain on the front top of head. My eyes are red every morning and cheek and jaw bone aches some with my trigeminal neuralgia.

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Comment from: tania, 45-54 Female (Patient) Published: July 01

My trigeminal neuralgia (TN) gives me a lot of trouble. I get twinges of pain every day at least 3 times. I was told after 20 years the doctors could do nothing for me. They tried all the medications they could, all non-medical treatment ranging from hypnosis to TENS (transcutaneous electrical nerve stimulation) machine and still nothing. My heart goes out to all you people suffering TN. I had 13 injections in the front temporal lobe in 68 minutes one time where my TN is.

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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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