Patient Comments: Trigeminal Neuralgia - Experience

Please describe your experience with trigeminal neuralgia.

Comment from: facialpain, 65-74 Female (Caregiver) Published: May 23

Finally I am just starting to get help for trigeminal neuralgia and took so many years to find this study for facial pain management. Also the oral surgeons and dentists were just too happy to extract my teeth and said implants would be a solution. So now I have only 8 lower teeth left. After the expensive oral surgeon took out five front teeth, (I am now back toothless, I knew this wasn't the answer, the problem was from pain especially in my upper gums. Also pain under my right eye, my lower lip, upper palate, all from an Injury caused by 'safe' cosmetic injections. Not. Be careful about what lurks out there. This chronic pain impairs my cognitive functions, that is how distracting, bad it gets. Odd, it is almost always less at night. I wonder if anyone else has less facial pain after the daylight is gone.

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Comment from: gailerichsen, 75 or over Female (Patient) Published: May 16

About 18 months back I had my first attack of trigeminal neuralgia and it brought me to my knees. I thought I was going to die, the pain was horrible and then it kept coming over and over. All I can say is, to me this was the end. Then it was over or so I thought, I have now had so many attacks with this horrible pain and I had no idea what or why. I went to the local doctor, had an x-ray, but I then assumed it was dentures and I needed new ones. This past April I was visiting my younger sister and I had an attack, my son in law then said something about his mother and she had had this and got surgery. He called and then I had a name for what was happening to me, now I understand and am trying to get help, but as I write this I am sitting here getting attacks constantly. And it is the most horrible face pain ever.

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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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Trigeminal Neuralgia - Causes Question: What was the cause of the trigeminal neuralgia you suffered?
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