1. < Brain & Nervous System

Trigeminal Neuralgia*

Posted by lamerex4 @lamerex4, Jun 23, 2016

My 92 year old father was diagnosed with Trigeminal Neuralgia more than a decade ago. For a long time Amitriptyline kept the 'strikes' at bay. He became symptomatic again last October. In March they did a Gamma Knife radiation treatment. This halted his symptoms for about 6 weeks. Two weeks ago he started having daily 'strikes' again. His PCP switched him from Amitriptyline to Lyrica. Now that he is weaned completely off the Amitriptyline and on the full dose of Lyrica he is having 'strikes' several times a day. The local neurosurgeons won't consider surgery, but we are desperate. Any insights at all on any therapeutic modalities would be appreciated. Acupuncture was not effective.

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vickylynn | @vickylynn | Jun 18, 2018
In reply to @vickylynn "I had gamma knife surgery almost a year ago. It helped one portion of my face..." + (show)
@vickylynn

I had gamma knife surgery almost a year ago. It helped one portion of my face but not around my eye toward my ear and above. Not sure if I want any more procedure or continue on meds.

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I'm taking Trileptal 300mg 4x a day. I had to increase the med about four months ago. Still hoping.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 18, 2018

@vickylynn Hello Vicky:

If you are comfortable sharing more could you tell us what your original symptoms of TN were and what they are now?

I look forward to hearing from you.

Teresa

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1 reply
annamh | @annamh | Jun 18, 2018
In reply to @vickylynn "I had gamma knife surgery almost a year ago. It helped one portion of my face..." + (show)
@vickylynn

I had gamma knife surgery almost a year ago. It helped one portion of my face but not around my eye toward my ear and above. Not sure if I want any more procedure or continue on meds.

Jump to this post

The problem that I had with trileptal was my stadium kept falling to a critical level. They took me off of it.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 18, 2018
In reply to @vickylynn "I had gamma knife surgery almost a year ago. It helped one portion of my face..." + (show)
@vickylynn

I had gamma knife surgery almost a year ago. It helped one portion of my face but not around my eye toward my ear and above. Not sure if I want any more procedure or continue on meds.

Jump to this post

Hello @annamh

I am not familiar with the term "stadium." Could you please explain? Thanks so much.

Teresa

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annamh | @annamh | Jun 18, 2018
In reply to @hopeful33250 "@vickylynn Hello Vicky: If you are comfortable sharing more could you tell us what your original..." + (show)
@hopeful33250

@vickylynn Hello Vicky:

If you are comfortable sharing more could you tell us what your original symptoms of TN were and what they are now?

I look forward to hearing from you.

Teresa

Jump to this post

Meant sodium

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vickylynn | @vickylynn | Jun 19, 2018

I always had ear pain. My right eye and right nostril was always running. Then I started with horrible headache only on my right side of my head. I went to my dentist because I thought I had a bad tooth. My teeth were fine so I saw a ENT and he recommended the neurologist and he suspected the trigeminal neuralgia.

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annamh | @annamh | Jun 19, 2018
In reply to @annamh "Well, I had the MVD, about a month ago. At first there was no pain, except..." + (show)
@annamh

Well, I had the MVD, about a month ago. At first there was no pain, except for the incisional pain. Now I am getting intermittent pain, I am hoping this is temporary. The Neurosurgeon said it could take about 6 months for the swelling to go completely down. I am praying it works.

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Still have some meds, starting to titrate off the meds. Will keep you updated.

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carmelo1morrone | @carmelo1morrone | Jun 21, 2018
In reply to @annamh "Well, I had the MVD, about a month ago. At first there was no pain, except..." + (show)
@annamh

Well, I had the MVD, about a month ago. At first there was no pain, except for the incisional pain. Now I am getting intermittent pain, I am hoping this is temporary. The Neurosurgeon said it could take about 6 months for the swelling to go completely down. I am praying it works.

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Anna are you feeling the electrical shock pain, can't mistake that from any other kind of pain. You will feel better, it just takes time. It has been 7 1/2 months and I feel better then at 6 months. You are your best doctor and will know if you are getting better. I hope and wish you all the best.

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annamh | @annamh | Jun 21, 2018
In reply to @annamh "Well, I had the MVD, about a month ago. At first there was no pain, except..." + (show)
@annamh

Well, I had the MVD, about a month ago. At first there was no pain, except for the incisional pain. Now I am getting intermittent pain, I am hoping this is temporary. The Neurosurgeon said it could take about 6 months for the swelling to go completely down. I am praying it works.

Jump to this post

Thank you for the information, the electrical shock, is down to twice a week so far.

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carmelo1morrone | @carmelo1morrone | Jun 22, 2018
In reply to @annamh "Well, I had the MVD, about a month ago. At first there was no pain, except..." + (show)
@annamh

Well, I had the MVD, about a month ago. At first there was no pain, except for the incisional pain. Now I am getting intermittent pain, I am hoping this is temporary. The Neurosurgeon said it could take about 6 months for the swelling to go completely down. I am praying it works.

Jump to this post

Anna I found out 14 plus years ago what that weird feeling I was feeling every time I was eating i would get this slight tingle pinch feeling on my left side of my teeth and face. So what do you do? I went and got my teeth checked. Since I just moved to the Hudson Valley in Upstate New York I had to find a dentist. This dentist told me that the pain was from the infection go over my tooth and settling in the tooth, and wanted to remove the tooth. Well I still have that tooth and the pain is gone. Last year in May I went to visit my son and his family in Florida. I was having discomfort before I left and when I arrived I was more then hurting, I was miserable. Of the seven days there I was in pain for six of them. When I arrived home i was able to see my neurologist and he prescribed another pill to add to my daily (vitamins). That is when I decided to get the surgery. My new thing of concern has to do with the the MRI contrast dye called GADOLINIUM. It seems when they inject that in you there seems a sediment deposit CAN settle in your brain and cause many reactions, which will come out in different ways. I am just trying to get tested for this. My doctor has to find a lab that can produce this test to get it done. Everyone who had a contract dye during a MRI procedure check if it was GADOLINIUM and get yourself checked out.As I tell my friends that is your $9.95 lesson for today. Anna I feel great and will address this ,if it is of a future concern, PEACE.

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