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.

@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

Jump to this post

@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

REPLY

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?

REPLY
@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

Jump to this post

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

REPLY

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.

REPLY

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/

REPLY
@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/

Jump to this post

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

REPLY

My name is Cathie Harris. For the past 6 years my husband Eddie has suffered with debilitating facial/head pain. After numerous trips to ENT, Dentists, Optometrist, MD's and neurologists, and being put through numerous tests including CT scans and MRI's he was diagnosed with Trigeminal Neuralgia. We have had conversations with the neurosurgeon regarding radiation to the are or having the microvascular decompression surgery but his symptoms are not like the "typical" "Sudden shock like pain lasting briefly". His pain does come on suddenly but the pain isn't like "shock like", his pain is excruciating and is more in his face but radiates through the entire side of his head. His pain usually last from an hour to several hours and most often happen at night.

All of the research we have done on TN is totally opposite of his symptoms. Could you please pass this email on to Dr. Bruce E. Pollock and his colleagues and see if they agree with this diagnosis before we agree to the microvascular decompresson surgery. We can send the latest MRI if necessary.

Thank you for your help in this matter,

Cathie

REPLY
@cdharris

My name is Cathie Harris. For the past 6 years my husband Eddie has suffered with debilitating facial/head pain. After numerous trips to ENT, Dentists, Optometrist, MD's and neurologists, and being put through numerous tests including CT scans and MRI's he was diagnosed with Trigeminal Neuralgia. We have had conversations with the neurosurgeon regarding radiation to the are or having the microvascular decompression surgery but his symptoms are not like the "typical" "Sudden shock like pain lasting briefly". His pain does come on suddenly but the pain isn't like "shock like", his pain is excruciating and is more in his face but radiates through the entire side of his head. His pain usually last from an hour to several hours and most often happen at night.

All of the research we have done on TN is totally opposite of his symptoms. Could you please pass this email on to Dr. Bruce E. Pollock and his colleagues and see if they agree with this diagnosis before we agree to the microvascular decompresson surgery. We can send the latest MRI if necessary.

Thank you for your help in this matter,

Cathie

Jump to this post

Hello @cdharris, Welcome to Mayo Clinic Connect. We are not able to communicate directly with Mayo doctors as we are patients like your husband. Am I right to assume your husband has been diagnosed at the Mayo Clinic? If you have, you should be able to use the Mayo Clinic Patient Portal to send your doctor or surgeon a message through the patient portal.

REPLY
@cdharris

My name is Cathie Harris. For the past 6 years my husband Eddie has suffered with debilitating facial/head pain. After numerous trips to ENT, Dentists, Optometrist, MD's and neurologists, and being put through numerous tests including CT scans and MRI's he was diagnosed with Trigeminal Neuralgia. We have had conversations with the neurosurgeon regarding radiation to the are or having the microvascular decompression surgery but his symptoms are not like the "typical" "Sudden shock like pain lasting briefly". His pain does come on suddenly but the pain isn't like "shock like", his pain is excruciating and is more in his face but radiates through the entire side of his head. His pain usually last from an hour to several hours and most often happen at night.

All of the research we have done on TN is totally opposite of his symptoms. Could you please pass this email on to Dr. Bruce E. Pollock and his colleagues and see if they agree with this diagnosis before we agree to the microvascular decompresson surgery. We can send the latest MRI if necessary.

Thank you for your help in this matter,

Cathie

Jump to this post

Hi @cdharris, John is right. Mayo Clinic Connect is a place to connect with other patients and caregivers like yourself.

Should you wish to consult with Dr. Bruce Pollock and colleagues, please contact Mayo Clinic in Rochester, Minnesota. Here is the contact information http://mayocl.in/1mtmR63

Mayo Clinic experts may be able to consult with your current care team with respect to the diagnosis and proposed treatment options.

Cathie, have you and your husband considered getting a second opinion at Mayo Clinic?

REPLY
@cdharris

My name is Cathie Harris. For the past 6 years my husband Eddie has suffered with debilitating facial/head pain. After numerous trips to ENT, Dentists, Optometrist, MD's and neurologists, and being put through numerous tests including CT scans and MRI's he was diagnosed with Trigeminal Neuralgia. We have had conversations with the neurosurgeon regarding radiation to the are or having the microvascular decompression surgery but his symptoms are not like the "typical" "Sudden shock like pain lasting briefly". His pain does come on suddenly but the pain isn't like "shock like", his pain is excruciating and is more in his face but radiates through the entire side of his head. His pain usually last from an hour to several hours and most often happen at night.

All of the research we have done on TN is totally opposite of his symptoms. Could you please pass this email on to Dr. Bruce E. Pollock and his colleagues and see if they agree with this diagnosis before we agree to the microvascular decompresson surgery. We can send the latest MRI if necessary.

Thank you for your help in this matter,

Cathie

Jump to this post

@cdharris-Hi. It can be a long journey when trying to navigate/figure out cranial pain and where it is coming from. While you have had all of the MRIs/CTs, my question is did “they” determine anything from there?
•Trigeminal (strongest cranial nerve) and Neuralgia just means nerve pain. It can mean many other things and it is a very broad diagnosis, so don’t let that scare you. “Neuralgia” “Neuropathy“ both are essentially pain. It is how it is perceived by the patient. And if your husband is feeling it’s atypical from the shock like pain coming on, then let that be the guide. Don’t get too caught up on the word of the diagnosis more over how your husband explains it.
•If most people are given an MRI they will see a slight communication between the trigeminal nerve and cerebellar artery. These can be common findings. So if you were told that, don’t let that be the sole driving factor.
•Curious if the dentist, ENT and ophthalmologist you saw, shared any vested interest in the Trigeminal nucleus and the musculature into the neck and head.
•Dentists will listen for a click to rule out TMJ, but so asked neck head muscles don’t always render a click noise in the jaw joint.
•Optometrists main concern is vision, of his vision is fine. They pay no more attention to pain.
•ENTs should educate on TMJ tightness but don’t, and will only be concerned about eye/head pain coming from a sinus region. Once they rule that out, then they pay no mind to other pain.
•Neurologist vs. Neurosurgeon-a good Neurologist will ask about lifestyle, when the pain starts, where it comes from etc…they are very well aware that most head pain starts with tight neck, jaw muscles and radiate into eye and head.
If you end up at a Neuro “surgeon” they will most likely only offer you surgery. Keep in mind this is all elective meaning, you have a choice to believe if this is what is needed or not.
•Question-has his neck/back/shoulder muscles ever been checked for trigger points, spasms and tightness?
How does he hold his stress?
•Have you met with a physiotherapist?
There is a muscle are muscles in the neck that can lead to all kinds of facial head pain, especially at night when tightness builds while sleeping.
I would exhaust all efforts with someone who is looking at his musculature, especially in the upper cervical spine. Trapezius, SCM, Temporalis muscle.
This is a photo of the pain pattern that follows a tight neck muscle.
Just a thought. Hope the extra input helps.

REPLY

@deneenm and @cdharris — Depending on where your loved one is experiencing pain, they may try: Sensodyne or other sensitivity-type toothpaste (eg., my pain was at the gum line); or lidocaine patches if it's on the face or head; and / or CBD oil — orally or topically. All these can may be obtained over the counter.

Luckily my TN pain has been sporadic through the 40 or so years I've had it, and has not caused me serious issues… until last year. In 2020, I experienced a prolonged flare-up lasting two months, which slowly went its way over a period of a week… and has not returned. I know I'm blessed!

My best to both of you, and your family member.

REPLY

I am going to JUMP right in here and let everyone know that I was Finally Diagnosed with….Trigeminal Neuralgia…..
I was a member of the group to do with HEAD DIZZINESS…..undiagnosed…my name is "tootsbury"
Have a Long story but will make it short…had sometimes Severe Pain..from top of head to chin on right side of face…sometimes any of those places,sometimes All of them…dental Specialist sent me to
A "head " Dr and by that time I had tracked down info on the
Trigeminal Nerve, ..wrote it down to ask about it and when the Dr saw it he said,yes that is what you have. Next step,saw a Neurologist
and he has me on Topiramate 25mg. Will give Update later…….

REPLY
Please sign in or register to post a reply.