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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@suzeee39

I am sorry, I feel bad for anyone who has to endure this!

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Exactly! And one thing I hate is having people tell me that I don't need to take this med or that med because of the side effects.....they just take ibuprofen and go on. Well, honey,if all I can say is that if ibuprofen can control your pain,then God bless you. I have bilateral trigeminal neuralgia and the cold air triggers pain throughout my entire face and head....ALL my teeth hurt, I can't stand to comb my hair and nothing helps with the pain! I will take anything offered to me at this point! I've had the microvascular decompression surgery...with about five good months....and now I'm in agony and I am at the end of my rope! I don't care to live in this much pain on a daily basis...this is no kind of life. I see my neurologist again next month and I am praying for some help.

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@suzeee39

I am sorry, I feel bad for anyone who has to endure this!

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I agree. I also had MVD surgery but the pain came creeping back two weeks later. I had a neurostimulator implanted about a month ago and it has really helped me. Meds did nothing for me. I hope you find relief soon.

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@suzeee39

I am sorry, I feel bad for anyone who has to endure this!

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Thanks

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@suzeee39

I am sorry, I feel bad for anyone who has to endure this!

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Well said, and it's the same for me.

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@suzeee39

I am sorry, I feel bad for anyone who has to endure this!

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I took the meds that relieved the pain and was glad to throw them out. The meds changed my feelings and how responded. Today my kids say there good all dad back again. Everything is almost back to normal. Little numbness in some part of the face. I could not brush my teeth for months and now I am getting my dental work done, what a relief I am almost normal. This showed up about 10 plus years ago and progressed to a living nightmare. Hopefully I am done with it. My mvd worked for me.

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@suzeee39

I am sorry, I feel bad for anyone who has to endure this!

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I'm glad the mvd worked for you....it just didn't for me. They are considering the gamma knife procedure now. But I don't know.

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@suzeee39

I am sorry, I feel bad for anyone who has to endure this!

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Finally got an appointment, with the neurosurgeon, hope it works for me.

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@suzeee39

I am sorry, I feel bad for anyone who has to endure this!

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My appointment with the neurosurgeon is about the gammaknife, hoping that it will work

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@suzeee39

I am sorry, I feel bad for anyone who has to endure this!

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That's great, Anna. Please let us know how it goes and what the procedure is like. I'm sure others will like to hear. Thinking of you.

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@suzeee39

I am sorry, I feel bad for anyone who has to endure this!

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I will, thanks for the support.
Anna

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