Patient Comments: Trigeminal Neuralgia - Treatment

What treatments were effective for your case of trigeminal neuralgia?

Comment from: Dorothy, 55-64 Female (Patient) Published: April 30

I developed zoster shingles December 2013. Pain started in the back of my right eyeball and worked its way into the forehead and cranial area. I was diagnosed with a migraine. The shingles placed me in the hospital 3 times (21 days) and developing cellulitis from the hospital. I have been told in the last 16 months it's the worst ever seen. I am seeing Internal Medicine, Infectious Disease, neurologist, lung specialist, eye doctor, oculoplastic surgeon at this time monthly. Because of the nerve pain from trigeminal neuropathy (TN) and swelling from my eyebrow to cranium I cannot see a dermatologist yet. I have been on every pain medicine. Nothing works! Medication of 3600 mg of gabapentin causes hallucinations. I am now on Gralise 1800mg which is gabapentin used as a time release pill. Thirteen months ago I developed 2 extra rows of eye lashes growing downward on my cornea and since then I've had to have 19 lashes extracted every 3 weeks. The medicines I was given for pain caused me to be on a (Lyrica) respiratory machine for 12 hours a day. I have not been able to have surgery on my eye lid. The doctors said I'm at too much risk to be put to sleep. March 2015 I was referred to see an oculoplastic surgeon. He was able to deaden the eyelid and cut out the extra rows of lashes and gave me a steroid shot in the 2 optic nerves to block the pain. The next day all of the nerves from the optic nerves to the cranial area got ticked off, the nerve block shots did not work. Three weeks later I followed up and 5 more eye lashes have developed growing and are scratching my cornea. The oculoplastic surgeon suggested to cut out the two optic nerves above the eye to relieve me from all TN pain forever, as well as do electrolysis on the new 5 lashes. The drawback is that the right side of my face and cranium will be numb forever.

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Comment from: 4Nsix, 55-64 Female (Patient) Published: July 17

I was taking gabapentin for idiopathic nerve pain and tapered off due to the feeling of being not quite coherent. However, after nothing helped the facial, mouth pain, teeth pain, ear pain, gum pain, etc. I decided to try the gabapentin for this. Certainly takes the edge off but was diagnosed with trigeminal neuralgia (TN) and given Tegretol and told to taper gabapentin again as Tegretol has less side effects. The doctor has given both prescriptions in case Tegretol is not effective. Fingers crossed.

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Comment from: Marv, 75 or over Male (Patient) Published: June 30

A few years ago I selected noninvasive gamma knife therapy for trigeminal neuralgia (TN). This therapy reduced my pain markedly. I no longer take gabapentin and have reduced my intake of Tegretol to 200 or 400 mg/day. I had TN for at least 25 years and in the past was on a regimen of 1200 mg of Tegretol and 600 mg of gabapentin. I suggest that all those who suffer from TN at least give this therapy a try.

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Comment from: LB, 55-64 Female (Patient) Published: February 14

Cymbalta has worked wonders for my trigeminal neuralgia; taken once daily in the morning. I am affected both sides, all three branches. First symptoms were about 10 years ago.

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

I take 100 mg Tegretol 3 times a day and 800 mg ibuprofen twice daily for my trigeminal neuralgia. Also, an immediate relief for smaller episodes is a very hot wash cloth applied to the affected side about 3 repeated times. It helps immensely until my pain medication kicks in. I am not sure about the Tegretol, I feel I still have episodes. I am going back in 3 days for a checkup.

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Comment from: Sucess, 35-44 Female (Patient) Published: October 22

I have been suffering with TN (trigeminal neuralgia) type 2 for almost 3 years. I have tried all the epilepsy medications that they prescribed but nothing helped. Twenty one days ago my general physician put me on amitriptyline 25mg. The first week was bad to adjust your body to that as it makes you very sleepy. But I never got any attacks in the last 21 days. It's used in patients that suffer from depression or have continuous migraines and also bed wetting. I feel human again because there was not a day that went by that I never had the attacks.

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Comment from: twinrae, 65-74 Female (Patient) Published: January 09

I was diagnosed with trigeminal neuralgia almost 2 years ago, and have "break-through" times about every 3 months. I am up to 300mg Lyrica 2 t times day, pain medications don't usually help nerve pain.

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Comment from: UW patient, 55-64 Female (Patient) Published: September 10

I take 800 mg gabapentin daily. I use topical doxepin oral concentrate to numb the area. I take Tylenol Codeine #4 as needed for pain management.

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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 - Symptoms Question: What were your symptoms of trigeminal neuralgia?

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