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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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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@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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God Bless you ! ! Hope you will be TOTALLY PAIN-FREE FOREVER ! ! Despite the pain, we often appear that we are fine, despite our suffering . . . . there are seldom any exterior "tells". Know that others truly understand ! !

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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. It is so hard to describe what I go through to family and friends because they don't see any signs of illness. So happy to find a support group with people who are experiencing the same symptoms. Hope to get better. Did you have Gamma-Knife also?

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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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@vickilynn1959 , I hope things with the pain is getting better. I am now having the pain on both sides of my face, my teeth hurt most of the time. The weather seems to affect it also. My meds keep changing to help with the pain, I now take 400mg of Dilantin daily, cut down on the Neurontin from 2400mg daily to 1200mg in the am and add 600mg if needed. And lately I have had to add more. At times it even hurts to eat. Dentist said nothing is wrong with my mouth that he can see. I wonder if it is worth it to do the GammaKnife.
Anna

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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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@scarlettkitten, I totally agree, but at other times it sure brings me to tears.

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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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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.

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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.

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