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.

@tlgreg60

Hi. I’m caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don’t know where to turn. Obviously this is a lot bigger than I’m saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I’m still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

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to tlgregg60 Yes, one will go to eye dr, and dentist bec of area that
hurts. When trigeminal neuralgia was discovered in ER, they just gave
aspirin, so I continued in that vein. It can come back slightly off and
on. ladyjane86

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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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@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 wish I had something to offer for relief, but, alas, I do not. My father tried acupuncture but did not find it effective. His gamma knife procedure only offered relief for 5 weeks. He has been on doses of nortriptyline up to 80 mg. I did find a pillow on-line that is marketed for avoiding wrinkles. It is in the shape of a C so there is no pressure on his cheek. That seems to have helped greatly. He can’t lay on his other side because of an old, painful total hip replacement. Thankfully he has been strike free for about 4 weeks now, but he is in heart failure. I encourage you to find a neurologist as quickly as possible who specializes in trigeminal neuralgia. At the young age of 67, I would not hesitate to go to Mayo for treatment. I hope you find relief soon.

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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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Welcome to Connect @reneewise50. I’m so glad you connected with @lamerex4 and hope some of her suggestions helped.
Did you get an appointment on Monday? Have you found any pain relief?

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Thank you Colleen for asking. I have an appointment in October with the neurologist. I am on gabapentin and Baclofen right now but may need to tweak it a little as the pain gets quite severe at times. Right now it seems to be going away but not entirely. Two days ago I was having 25 to 30 flareups with severe shooting, stabbing pains, but today I only have about 20 so far. At least it’s going in the right direction. Nothing really stops the pain, unfortunately.

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MY FACE STARTED OUT TO BE NUMB ON ONE SIDE BUT THEN BOTHE SIDES OF MY FACE ARE NOW NUMB HARD TO EAT AND I HAVE LOST 30 LBS IN THE LAST YEAR. IF YOU KNOW ANY NEW MEDICINE I WOULD LIKE TO KNOW IF IT WORKED NO ONE KNOW HOW THIS GET ON YOUR NEVERS I USE ICE PACKS.

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@colleenyoung

Hi @lamerex4,
It must be so hard to see your father suffer with this pain. Mayo Clinic’s info on trigeminal neuralgia treatments list a variety of anticonvulsants, antispasmodic agents or botox injections http://mayocl.in/1Mz18C8 You may wish to read this older discussion thread where Connect members @cagon @jwhite64 @calebba @jenkob @zane @omlee @nomore are talking about their experiences with treatment http://mayocl.in/28SOKk5

@Restless67 do you have any suggestions for @lamerex4?

@lamerex4, does your father live with you? Are you his main caregiver?

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I HAVE NO HELP BUT ARE IN THE SAME VOTE BOTH SIDE OF MY FACE ARE NUMB AND IT DRIVES ME CRAZY. THE MEDS I HAVE TRIED HAVE NOT HELP I USE ICE PACKS I CARRY THEM EVERYWHERE. THAT SEAMS TO HELP SOME . IF ANYONE KNOWS ANY MEDS THAT MIGHT HELP I WOULD LIKE TO HEAR FROM THEM… I DON’T THINK TO MANY PEOPLE AND DRS. KNOW TO MUCH ABOUT THIS. I HAVE BEEN TO A SPECIALIST AND HE SAID DON’T HAVE SURGERY. THANKS

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Welcome to Connect @bigred80. I’m sorry to hear about your ongoing struggle with pain. Mayo Clinic’s info on trigeminal neuralgia treatments list a variety of anticonvulsants, antispasmodic agents or botox injections, as well as surgical treatments http://mayocl.in/1Mz18C8 What treatments have you tried with your medical care team?

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I HAVE HAD OXCARBAZEPINE 300MG TEGRETOL -XR 100MG DULOXETINE DR 600 MG BEEN TO SPECIALIST HE SAY NO SURGERY BECAUSE OF WHAT MIGHT HAPPEN TO MY FACE. SO FAR TRYING TO TOUGH IT OUT BUT HARD TO DO USE ICE PACKS MOSTLY AND PAIN KILLERS.

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Suffering from trigeminal neuralgia, can anyone relate? Any sugestions?

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@kandigirl25

Suffering from trigeminal neuralgia, can anyone relate? Any sugestions?

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My 92 year old father has trigeminal neuralgia. None of the newer drugs gave him relief but he got some relief for several years with amitriptyline. When that stopped working he had a gamma knife procedure which worked for 5 weeks. Find a doctor that thoroughly understands the magnitude of this syndrome.

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Welcome @kandigirl25, I’m glad to see that you connected with @lamerex4. You’ll notice that I moved your message to an already existing discussion where a group of Connect members are talking about living with trigeminal neuralgia. In addition to Lamerex4, you’ll meet @bigred80 @tlgreg60 @reneewise50 @ladyjane85 and @uncbball.

I like Lamerex’s suggestion of finding a doctor who understands TN. Kandigirl, what treatments have you had thus far?

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