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.

Liked by lauren123, annamh

@gchildren7

Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling in mouth as if bad saliva draining from gums (like glue) as well as one eye feels horrible ( keeps eye patch over it-itchy as if something is in it & irritated).

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I have had all of your symptoms for about a year. I went to an ENT because I knew something just wasn’t right and he sent me to my Neurologist. It has been really hard to work. I take Trileptal 300mg three times a day. It helped for about a month and then symptoms got worse. I felt gamma-knife was my only option. I Want my life back. Will keep you posted on my progress. Keep positive!

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@vickylynn, when trileptal was in my med cocktail, had more pain free days than now, but my sodium kept dropping to a critical level and ended up in the hospital, just would like to be pain free. I sometimes catch myself taking the frustration out on my family. That’s not good.

Liked by annamh

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@gchildren7

Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling in mouth as if bad saliva draining from gums (like glue) as well as one eye feels horrible ( keeps eye patch over it-itchy as if something is in it & irritated).

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You are so right.

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@vickylynn

Didn’t see your other post. I will let you know. I don’t have pain on the other side. But the side with TN has been horrible. I haven’t been able to go to the dentist because of pain. I have trouble with my vision. Constant pain.

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never thought of it affecting my vision

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@annamh

@vickylynn, when trileptal was in my med cocktail, had more pain free days than now, but my sodium kept dropping to a critical level and ended up in the hospital, just would like to be pain free. I sometimes catch myself taking the frustration out on my family. That’s not good.

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I get blood work every three months. So far no problem. I have to take it three times a day. I get pain about six hours after taking a pill. The only problem with this is it doesn’t carry me through the night. I wake up with pain and a halo feeling in my right eye. My best friend doesn’t get it that I am not as social anymore. I just don’t feel like shopping or dinner with our friends. I feel lucky to make it through a day of work. My friends at my job can tell when things are bad because they are with me more than my husband or my best friend. Hard to have patience and enjoy life with so much pain. It has helped me to find people with the same problem I felt like no one ever understood what I go through.

Liked by annamh

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@annamh

@vickylynn, when trileptal was in my med cocktail, had more pain free days than now, but my sodium kept dropping to a critical level and ended up in the hospital, just would like to be pain free. I sometimes catch myself taking the frustration out on my family. That’s not good.

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I do not like eating in public I never know if I am hitting my mouth and have it on my face because I can't feel it. does anyone else have that problem?? I like being outside when it is cold my face feels better having something cold on it. lets all try to have a good day tomorrow good luck

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Did you have gamma-knife surgery? I’m afraid of having my face feel numb after the surgery. Cold air makes my face hurt.

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@annamh

@vickylynn, when trileptal was in my med cocktail, had more pain free days than now, but my sodium kept dropping to a critical level and ended up in the hospital, just would like to be pain free. I sometimes catch myself taking the frustration out on my family. That’s not good.

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My blood work is that often also. I take one day at a time, anymore

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I have trigeminal neuralgia and am out of work until i have radiation. Does anyone know of any agencies or sites or anyone that can help with financial issues till i can get back to work??

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@babytazrose30

I have trigeminal neuralgia and am out of work until i have radiation. Does anyone know of any agencies or sites or anyone that can help with financial issues till i can get back to work??

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Hello @babytazrose30, welcome to Mayo Connect. I’m glad you found us. Connect is a good place to ask questions, share your story and find out what others with similar health concerns are doing for treatments. I know it may be a lot of reading but you might want to go to the top of the screen and click First to see the start of the discussion and read through posts by others to see if you can find what the information you need.

I’m not sure about any financial assistance but you may want to do a search on Google (http://www.google.com/) for “financial assistance” to see if there are any local or state agencies in your area that can help. I know Minnesota has several down to the county level.

John

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@annamh

@vickylynn, when trileptal was in my med cocktail, had more pain free days than now, but my sodium kept dropping to a critical level and ended up in the hospital, just would like to be pain free. I sometimes catch myself taking the frustration out on my family. That’s not good.

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I understand I’m the same way take it out on the Family just glad they all understand what’s going on they changed my cocktail around sodium doesn’t drop but I sure get extra tired

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@vickylynn

Did you have gamma-knife surgery? I’m afraid of having my face feel numb after the surgery. Cold air makes my face hurt.

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I had gamma-knife on Aug 3. So far no side effects. I am feeling much better. I think I might be ready to reduce the amount of trileptal from 300mg 3x daily to 150. I see my doctor on October 3. Keep you posted.

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@reneewise50

I am 67 years old, woman and have Trigeminal neuralgia. I am currently taking Gabapentin, 250mg 3X day. This was originally for nerve pain in my back. It does not help the TN pain. I was also on a very low dose of amitriptilyn but got heart arrhythmia after a couple years. I am getting sever flair ups all day/night. I see a pain psychologist as needed for my back pain, and she is on a panel of doctors that treat all head pain too. I have to chart my TN pain for 30 days before I can get an appointment with a neurologist. I am going to call Monday and beg to get in earlier. Are there ANY home remedies or suggestions that can stop the intense, severe, burning and shooting pain? The longest it lasts is 5 minutes, and is consistent off and on every day now.

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I am 63 yr old female, first bout with Trigeminal neuralgia in 1980–took months of visits to Dentist than Doctor back & forth–finally the Doctor said he had a hunch, diagnosed TN than prescribed Dilantin, took 1 pill at bed than 1 next morning-he only gave me 3! It took care of it completely, until 1991, I took the 3rd Dilantin pill he had prescribed that I guarded with my life and it went away! About 1 month ago, recurred, saw dentist last week, he Thank God took me at my word because I am healthy and do not have a Doctor, prescribed me 6 Dilantin pills, took 5 this time to get relief, guarding last one and pain seemingly gone now! Before going to dentist, I used numbing cream on my face and orajel on my gums kept pain at bay!

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I have bilateral trigeminal neuralgia. I had microvascular decompression surgery on the left side in march. ….I still have pain in the incision site, fullness at times, if I bend over too much, dizziness. …the pain is still there…..Im back on neurontin with all its side effects. Some times I feel like I have ice picks stabbing in my ears and like I’ve been hit in the face with a 2×4 but of course I look fine so no one knows why the tears or twisted look on my face. Sometimes I think Im gonna lose it.

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@pcm1957

I have bilateral trigeminal neuralgia. I had microvascular decompression surgery on the left side in march. ….I still have pain in the incision site, fullness at times, if I bend over too much, dizziness. …the pain is still there…..Im back on neurontin with all its side effects. Some times I feel like I have ice picks stabbing in my ears and like I’ve been hit in the face with a 2×4 but of course I look fine so no one knows why the tears or twisted look on my face. Sometimes I think Im gonna lose it.

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I’m SO VERY SORRY for your pain and suffering; I sincerely empathize. You’re right, the outside world has no idea of the pain we experience while we still “Look Good”. Hang in there; others feel for YOU !

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