Patient Comments: Trigeminal Neuralgia - Experience

Please describe your experience with trigeminal neuralgia.

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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Comment from: Tammyp, 45-54 Female (Patient) Published: June 24

I first had issues with my sinuses, ear aches with infection and teeth aching with sharp pains. We just figured it was the sinuses causing all my issues. I had pain referring from bottom jaw on the right side and throbbing would refer also to the back tissues of my gums. I had sharp and burning sensation of pain in my ears, jaw and gum lines. I did a root canal and then when that did not work I had it pulled. I still had pain referring up and down the jaw and my gums and also ear pain that was unbearable. My doctor suggested it might be trigeminal neuralgia (TN). He put me on gabapentin and I will have to say I sleep well at night now. My pain has calmed down and I only take my pain pills once a day now versus 6 times a day. It's been a week on gabapentin and I feel like a new person. Hopefully my symptoms will help others with diagnosis of this terrible disorder. I'm doing another MRI for the facial muscles and nerves to check for tumors or anything else that would trigger this.

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Comment from: yuk, 55-64 Female (Patient) Published: June 20

I was diagnosed with trigeminal neuralgia (TN) last fall (2013). I had horrible pain from left ear through jaw and mouth, worst pain ever! I could not eat, drink, or talk for a week. I started medications and pain subsided. I stayed on medicines for 1 month after I was pain free. I felt great till March this year and it all came back. My doctor sent me to get an MRI. The next morning I received a call that I had a large brain tumor! A few weeks later I had it surgically removed. The tumor was on my trigeminal nerve. I'm 8 weeks out of surgery and hoping all stays well. They say in rare cases you may have a tumor. For information to all... get an MRI!

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Comment from: gandles, 75 or over Male (Patient) Published: June 19

I had some type of trigeminal neuralgia (TN) on and off for several years but it doesn't seem to conform to what I read and am told by physicians. Mine starts as a fairly mild right-sided headache/facial pain and spreads within 10 to 15 minutes to reach an excruciating pain from my lower jaw to my temple. The difference is: unlike 'normal' TN, not only can I touch the affected areas, but if I tap these with my fingertips, it eases or masks the pain and it lessens and eventually disappears within 1/2 an hour. I have just bought a small hand-held massage vibrating thing which I will try out (received it today) when the 'beast' strikes again - usually when I've been asleep for about an hour. I've been prescribed amitriptyline then Tegretol; neither did much and now gabapentin which I'm yet to try. I want my life back but there's not much of it left now.

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Comment from: Dee, 45-54 Female (Patient) Published: June 02

I have had trigeminal neuralgia (TN) for the last 5 years. It is only on the right side of my face. I have a shocking sensation on upper jaw, head is sensitive to touch during migraines, and a feeling of something crawling under my skin. The pain is controlled by regular visits to my chiropractor. This also cured the migraines I have lived with for years.

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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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