Patient Comments: Trigeminal Neuralgia - Experience

Please describe your experience with trigeminal neuralgia.

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: 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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Comment from: gmc1, 45-54 Male (Patient) Published: February 06

I've had trigeminal neuralgia (TM) for 2 1/2 years. Started with TM 1, intense shooting electric pain in right eye and cheek. It progressed to TM 2, electric pain from right ear to upper and lower jaw and through teeth followed by burning for 2 or 3 minutes. Both TM 1 and 2 appear sporadically throughout the day. I am on lamotrigine (4 X 25 mg twice daily), it worked for TM 1 but less effective for TM 2. TM is triggered by brushing teeth, swallowing, sleeping and on occasion cool drinks. I am living on Campbell Soup.

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Comment from: Gigi, 45-54 Female (Patient) Published: July 15

In July 2012 it felt like a lightning bolt had hit the right side of my face in 3 areas, my eye, my cheek bone, and jaw line. I have reflex sympathetic dystrophy (RSD) so I thought that`s what this was, just out of control. Then in September I began having the lightning bolt hit around my back, same side as well as the 3 areas on my face. I went to the emergency room and they told me it was my RSD. That it had progressed into now this horrible pain I was having. It wasn`t until I went to my neurologist that I learned I was experiencing trigeminal neuralgia (TN). I was never told what the pain that went around my back was. I had an MRI and I have no tumor or anything that would cause me to have TN. I live with the TN and am hopeful I will find a doctor that will do the Botox injections. My neurologist says they will take that pain away. The pain is very intense. I try not to move when it hits. Thank you for listening.

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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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