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

I would definitely recommend gamma knife. I had a hard time functioning because of the pain. I really don't remember having the gamma knife procedure. I was sedated enough to move or answer questions but I don't remember any of it. I had a halo screwed to my head in 4 places. I don't remember the doctor putting the halo on. At the end of my procedure I do remember the nurse taking the halo off. I had a severe headache for a little while maybe an hour. My son took me home and I just had to take it easy a few days. I highly recommend having this done. It has taken about two years for the full effect of the radiation to do it its job. My pain is minimal compared to what I had.

Liked by Lisa Lucier

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My brother has suffered from this extremely painful facial/brain disorder for years. He went through surgery approx 6 years ago and has managed quite well UNTIL NOW…the excruciating pain has returned and he’s about to give up says he will not live this way again! I’m desperately searching for answers and options for him. Anyone with information would be most helpful. thanks

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@paulamacmorgan

My brother has suffered from this extremely painful facial/brain disorder for years. He went through surgery approx 6 years ago and has managed quite well UNTIL NOW…the excruciating pain has returned and he’s about to give up says he will not live this way again! I’m desperately searching for answers and options for him. Anyone with information would be most helpful. thanks

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Hello @paulamacmorgan, welcome to Connect. I see you also started a conversation wondering if anyone had been treated for this condition at Mayo Clinic. Has your brother received an appointment already at Mayo Clinic, or are you still in the process of gathering information and hoping to seek an appointment? If you are comfortable sharing, what surgery initially helped your brother? Here is a bit of information on how Mayo Clinic treats trigeminal neuralgia, https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/diagnosis-treatment/drc-20353347. Has your brother tried some of these treatments other than surgery?

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@paulamacmorgan

My brother has suffered from this extremely painful facial/brain disorder for years. He went through surgery approx 6 years ago and has managed quite well UNTIL NOW…the excruciating pain has returned and he’s about to give up says he will not live this way again! I’m desperately searching for answers and options for him. Anyone with information would be most helpful. thanks

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@paulamacmorgan – I'd like to add my welcome to Mayo Clinic Connect. @jennheadlee @vickylynn @kim_o @annpie88 @jmjlove @carmelo1morrone may have some suggestions for you and your brother from their own or a loved one's experiences about controlling the pain from trigeminal neuralgia. Perhaps they can also share whether they or anyone they are aware of has had surgery for this condition and then had it come back to be very painful again.

How has this weekend been painwise for your brother, paulamacmorgan?

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Can someone please tell me their experience and /or success at Mayo to treat Trigeminal Neuralgia as I have a brother with a severe case and I’m looking for help

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@paulamacmorgan

Can someone please tell me their experience and /or success at Mayo to treat Trigeminal Neuralgia as I have a brother with a severe case and I’m looking for help

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Hi, @paulamacmorgan – I imagine the trigeminal neuralgia is really painful for your brother. I wanted to let you know I moved your post here to where you were posting before so that you can interact with others or their loved ones going through similar situations. If you click on VIEW & REPLY in your email notification, you will be taken to the full discussion on this topic and be able to read what others have experienced and treatment they've pursued for trigeminal neuralgia.

Hoping that @johnbishop and also @jenniferhunter will let you know about their consult and treatment at Mayo Clinic.

Has your brother had the opportunity to meet with the surgeon who did his previous trigeminal neuralgia surgery to see what they recommend? If so, what did they say about the symptoms returning?

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Hi, @paulamacmorgan – I've been a patient at Mayo Clinic Rochester Campus for many years and have always had excellent care and treatment. The different specialties do a great job of working together to diagnose and treat their patients. I was diagnosed with lymphedema at Rochester and during that time the cardiovascular doctor asked me how I was sleeping due to me answer some questions he had. He then sent me to sleep medicine for some tests and eventually an overnight sleep test where I was also diagnosed with severe obstructive sleep apnea. Mayo is a great choice for treating trigeminal neuralgia. Here are a few links that you may find helpful.

Trigeminial neuralgia care at Mayo Clinic — https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/care-at-mayo-clinic/mac-20353351
Doctors who treat this condition — https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/doctors-departments/ddc-20353350

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Hi all, as social interaction is limited with the COVID-19 virus and many members have concerns they'd like to discuss, just wanted to make you aware that Mayo Clinic Connect has opened up a brand new group dedicated to COVID-19, https://connect.mayoclinic.org/group/covid-19/. The hope is to help members connect and cope during these unprecedented times.

Please follow the COVID-19 group by clicking on +Follow, look at the discussions there and participate. You are also welcome to start a new discussion on any COVID-19-related topic you'd like to discuss.

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@deneenm

Ive been struggling with extreme pain for about 2 years. Feels like its in multiple teeth but after anywhere from minor dental work to root canals, Re root canals to extractions I'm told it's not my teeth. Having all these things done not only dident help but made my pain at a level 9/10 day in and day out for about 8 months. I'm told atypical odentalgia but also Trigeminal neuralgia is what I have however I did not suffer to this extent prior to dental work. Ive tried a few different meds for nerve pain but nothing seems to help at all. Ive had to take multiple trips to the ER because my top BP number has hit over 200's from the pain severity. I'm starting to lose hope and very afraid there will be no relief. I'm at breaking point. Has anyone gone through this kind of pain…..what helped? I've gone in for my first Trigeminal nerve block and was ok for about 3 hours and then the pain came back. I noticed at Mayo Arizona where I'm at that they might have a pain rehab inpatient clinic and wondered if anyone has used it or if someone like me would be accepted. Than l you for any advice

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@deneenm
Hi, welcome to Connect. That sounds excruciating! Have not dealt with chronic tooth pain personally but know that any tooth related pain can be hell! What kinds of pain meds have you tried? My wife's peripheral neuropathy is bad but she is managing, mostly with marijuana and occasional use of kratom, which is a leaf from SE Asia. Her pain is pretty much constant but the marijuana allows her "breaks" of a few hours here and there. That would not be to good if you have to go to work however. Are you able to get decent sleep or is the pain getting in the way of that? Good sleep/rest is crucial in dealing with pain.

As to the Mayo Pain Rehab Clinic, one Connect member, Rachel @rwinney, recently went through it at the Jacksonville Mayo site. She is currently working on herself using the techniques they taught her. Here is a link to a message she posted about it after she finished the 3 week session: https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/?pg=2#comment-452117
She told me recently that she still has her pain as before but that she now has tools to help her manage it better. Here is the website for the PRC: https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Good luck to you on finding answers for yourself. I hope your experience interacting with others on Connect is a positive and useful one for you. Best, Hank

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Ive been struggling with extreme pain for about 2 years. Feels like its in multiple teeth but after anywhere from minor dental work to root canals, Re root canals to extractions I'm told it's not my teeth. Having all these things done not only dident help but made my pain at a level 9/10 day in and day out for about 8 months. I'm told atypical odentalgia but also Trigeminal neuralgia is what I have however I did not suffer to this extent prior to dental work. Ive tried a few different meds for nerve pain but nothing seems to help at all. Ive had to take multiple trips to the ER because my top BP number has hit over 200's from the pain severity. I'm starting to lose hope and very afraid there will be no relief. I'm at breaking point. Has anyone gone through this kind of pain…..what helped? I've gone in for my first Trigeminal nerve block and was ok for about 3 hours and then the pain came back. I noticed at Mayo Arizona where I'm at that they might have a pain rehab inpatient clinic and wondered if anyone has used it or if someone like me would be accepted. Than l you for any advice

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Hello @deneenm and welcome to Mayo Clinic Connect. I am very sorry to read about your extreme pain and that you aren't finding something to help relieve it. @jesfactsmon has already shared some really helpful information (which you will actually see above your original post in the conversation now, as I merged your post into an existing discussion on Trigeminal Neuralgia so you could connect with other members who may be able to help.

If you click on VIEW & REPLY in your email notification, you will be taken to the full discussion on this topic and be able to read what others have experienced and treatment they've pursued for trigeminal neuralgia. I am hoping that @johnbishop and also @jenniferhunter will let you know about their consult and treatment at Mayo Clinic.

Have you been to Mayo Clinic in Arizona or another hospital for care up to this point?

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@deneenm

Ive been struggling with extreme pain for about 2 years. Feels like its in multiple teeth but after anywhere from minor dental work to root canals, Re root canals to extractions I'm told it's not my teeth. Having all these things done not only dident help but made my pain at a level 9/10 day in and day out for about 8 months. I'm told atypical odentalgia but also Trigeminal neuralgia is what I have however I did not suffer to this extent prior to dental work. Ive tried a few different meds for nerve pain but nothing seems to help at all. Ive had to take multiple trips to the ER because my top BP number has hit over 200's from the pain severity. I'm starting to lose hope and very afraid there will be no relief. I'm at breaking point. Has anyone gone through this kind of pain…..what helped? I've gone in for my first Trigeminal nerve block and was ok for about 3 hours and then the pain came back. I noticed at Mayo Arizona where I'm at that they might have a pain rehab inpatient clinic and wondered if anyone has used it or if someone like me would be accepted. Than l you for any advice

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Hello @deneenm, I would like to add my welcome to Connect along with @jesfactsmon, @amandajro and other members. You mentioned Mayo Clinic Arizona. Have you considered seeking help there? It looks like they have an excellent program – Trigeminial neuralgia care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/care-at-mayo-clinic/mac-20353351

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Sorry guys I'm new to this so I hope I'm doing it right lol. Thank you for the responses. The meds I've I tried are amatriptalyine, nortriptyline, Gabapentin, clonazepam, and a few others. I'm currently taking hydrocodone but it's starting to lose it's effectiveness so I'm so worried. I'm or a patient of Mayo but in my research in a attempt to find relief I found a article about a women who had facial pain. Severe enough to bring her into the Mayo ER. She was admitted to the ER in Az where she had a consult with a neurosurgeon by the name of Richard Zimmermann.

I'm also at the point of going to the ER but with Covid and so many genuinely sick people needing help, I kind of would feel selfish, although my primary backs this option. Someone has mentioned medical marijuana which is something I would be willing to try. However, where I am going to get the trigeminal nerve blocks as well as the prescriber of the hydrocodone will cut my meds off if I even see if it helps. With the pain I can't risk it, it just makes no sense to not be able to try something less harmful. I tried a orofacial pain clinic. They made a mouthguard and recommended the nortriptyline. Ive been doing some research on oral topicals that can be made at a compounding pharmacy but it appears that many doctors are simply not well versed on it.

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Hi @deneenm, I noticed that you wished to post a URL to a story on Sharing Mayo Clinic with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, so allow me to post it here.

– After More Than Two Decades, Ellen Bids Devastating Facial Pain Goodbye https://sharing.mayoclinic.org/2020/03/02/after-more-than-two-decades-ellen-bids-devastating-facial-pain-goodbye/

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@amandajro

Hi @deneenm, I noticed that you wished to post a URL to a story on Sharing Mayo Clinic with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, so allow me to post it here.

– After More Than Two Decades, Ellen Bids Devastating Facial Pain Goodbye https://sharing.mayoclinic.org/2020/03/02/after-more-than-two-decades-ellen-bids-devastating-facial-pain-goodbye/

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Thank you so much for posting that in here for me.

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