Patient Comments: Trigeminal Neuralgia - Symptoms

What were your symptoms of trigeminal neuralgia?

Comment from: Em, 55-64 Female (Patient) Published: September 30

My trigeminal neuralgia symptoms started with a cough and two sneezes, progressing constantly to the point of gagging. I would literally wake up in the middle of night coughing to the point of vomiting. I was told I have MVD (microvascular decompression) with a blood vessel flush against my trigeminal nerve on the stem of the brain. I ended up in the hospital in critical care due to sodium dropping to 118. While in there I was given Tylenol 3 (cough suppressant) every 6 hours in March 2015. I have had no symptoms since being discharged on 3/15/15. This problem was affecting my larynx, causing hoarseness and fatigue.

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Comment from: Fisherman, 55-64 Male (Patient) Published: February 18

My trigeminal neuralgia started 8 years ago. It started with a tickle in the right ear and then progressed to sharp pains in the face. I have been taking medication which has helped relieve the pain but now it seems to be losing its effect. I am thinking about surgery but the fix seems dangerous and extremely risky. The problem is I don't know where to go to find a surgeon with the experience to do this procedure.

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Comment from: David, 45-54 Male (Patient) Published: May 02

My trigeminal neuralgia (TN) started about three years ago and after going through tests and constant visits to the dentist, a new primary care physician recognized the pain as TN. I already take Tegretol so we tried other drugs. What confuses me is that I have no symptoms and no pain most of the year. Suddenly every April, I start to have horrible TN episodes, as many as several times a day. Just as suddenly, they stop in July. No one can explain this so I just live through it.

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Comment from: lk, 65-74 Female (Patient) Published: March 18

I had my first symptoms 16 years ago, I thought it was a toothache. After a root canal didn"t help, I was referred to a neurologist and diagnosed with trigeminal neuralgia. After reactions to many drugs, and at the point where I was losing weight because I couldn"t eat because of the pain, finally I could tolerate the drug Neurontin, and after almost a year of pain I got relief. My pain was constant and I was told the cure was brain surgery. I was pain free for fourteen years; recently I am experiencing on and off pain, and I am actually scared I will have to go through this again. I hope it will go away.

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Comment from: ruthanna, 45-54 Female (Patient) Published: January 17

With trigeminal neuralgia my eyeball area felt like it was on fire. My nostril felt like it was on fire and my jaw and teeth felt like it was just in pure pain. All on the right side of my face, nothing on the left side at all! All could be well one moment and I'd feel one of the above flare up. Within 5 minutes I'd be in the fetal position, barely able to speak from pain. It would start with one flaring up and then it was all 3 of them in pain.

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Comment from: cgoble, 55-64 Female (Patient) Published: September 14

I have multiple sclerosis and being treated. I just told my doctor on Wednesday about the aching in my jaw but, as it is increasing somewhat. I take 600 mg gabapentin and codeine, and also ibuprofen or Tylenol, it still hurts. I have seen my doctor on Wednesday and she said aching in jaw (trigeminal neuralgia) is a symptom of my disease and to just take ibuprofen. It still hurts. My age is a slowdown factor also.

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Comment from: claire20, 55-64 Female (Patient) Published: December 30

I developed trigeminal neuralgia (TN) last year. I had electric shock like pain in my sinus area and back teeth when I spoke. I was prescribed pain killers but they didn't help much. I had TMJ (temporomandibular joint disorder) many years ago and still had the bite plate my dentist made for me in my drawer. I heard that it could help with TN as well. I wore it overnight and the next day I could speak pain free if I kept the bite plate in all day. A dentist told me it could take only six to eight weeks before I'm pain free without the mouth piece. I spent lots of money on doctors, MRI, and pills for nothing. Wish I would have known this would be the answer.

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Patient Comments

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Trigeminal Neuralgia - Experience Question: Please describe your experience with trigeminal neuralgia.
Trigeminal Neuralgia - Causes Question: What was the cause of the trigeminal neuralgia you suffered?
Trigeminal Neuralgia - Treatment Question: What treatments were effective for your case of trigeminal neuralgia?

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