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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pollysparrow | @pollysparrow | May 7, 2021

In reply to @pollysparrow "Suppose to see Alexander Drofa,MD 700 1ST AVE S FARGO ND 5-20-2021" + (show)

saw Dr Spence my Internal Medicen DR today Bagley Sanford I was due for a prolapse repair by Dr Seitz and Collition now it depends on the outcome of Fargo I have a lot of ongoing issues one is Heraditary Hemochromotosis from my father which is a really degenerative thing I found out I had in 1989 when I came to Mn to care for grama I do blood work every 3 months to keep in maintenance and under 50 see what you think I know my body and and how I feel do not want a wire in my neck to my brain spence says its just a talk visit never met this Dr before I have been fine but I had a fall and they think I need to see him I have a lot of old injurys and bumps to my head and body through 76yrs and I am a active person as I can be for my age I just want to make sure its needed as I have enough health issues and this prolapse needs to be done sometime see what you think thank you Barb Baker I ive alone and have never had a fall in my house in 30 yrs felt like I was pushed I want to continue on being able to live and get around all my family is passed but 2 grown children of mine that are no help what so ever wait for a reply thank you Mayo your are the ones that found and diagnosed my Hemochromotsis yrs ago stil have my #6111102 Talked to a Zac there not long ago for referring physican service for the prolapse again thank you need you outlook

pjf | @pjf | May 8, 2021

In reply to @pollysparrow "saw Dr Spence my Internal Medicen DR today Bagley Sanford I was due for a prolapse..." + (show)

Thank you so much for all your information. I hope your visit goes well and you can finally get relief.

jmb73 | @jmb73 | Jun 11, 2021

Hi Everyone, I have had ear pain from a blocked parotid gland for over 10 years and treat it with CBD and heat. Recently, I had a different pain for 3 weeks and it was extending from my ear down to the center of my chin. Last Monday, the pain was awful. I called my PC but couldn't get in so I went to Centra care where I was diagnosed with trigeminal neuralgia. I was put on 30 mg of prednisone for 10 days. I do take Gabapentin- 900mg/ day for neuropathy. I can't take amlytripoline as I have Sjogren's. I had Gamma surgery in 2019 for a meningioma. Do any of you know if it's related? I called my PC' office yesterday and my PC is on maturnity leave. the covering doc said to go back to Centra care but Centra care said to deal with my PC. The notes the doc put in my chart said it was Gout! I have messaged the office as I don't have Gout and she never even saw me. One of my questions was if I should increase my Gabapentin but the doc wrote it doesn't help Gout. I will be so glad when my PC is back but I don't know what to do. I can't take NSAIDS as I have AFIB. Is Gabapentin the best drug? Thanks for you help.

John, Volunteer Mentor | @johnbishop | Jun 11, 2021

In reply to @jmb73 "Hi Everyone, I have had ear pain from a blocked parotid gland for over 10 years..." + (show)

Hi @jmb73, Sorry to hear your primary care doc is temporarily unavailable. I've had gout in my foot before and Colchicine helped with the inflammation causing the pain. We are not able to give medical advice as members and patients ourselves. I would be calling Centra Care to argue what their coverage is when your PC is temporarily not available. I found some possibilities that lists some home remedies that may be helpful.

8 Causes of Ear and Jaw Pain: https://www.healthline.com/health/pain-relief/ear-and-jaw-pain

jmb73 | @jmb73 | Jun 12, 2021

In reply to @johnbishop "Hi @jmb73, Sorry to hear your primary care doc is temporarily unavailable. I've had gout in..." + (show)

Hi John, Thank you for the article. I think my dental cleaning made my pain worse. I have been checked for TMJ and was told that I don't have it. I have a neuro ear doc who said I have a chronic blocked parotid gland. This pain was different. The Centra care doc said it was definitely Trigeminal neuralgia. My question is mainly about Gabapentin and if it has worked for others who have Trigeminal neuralgia. Thank you, Joan

jmb73 | @jmb73 | Jun 12, 2021

Hi John, I am mainly concerned about Gabapentin and if it's a drug that others for Trigeminal Neuralgia. It's a scary diagnosis. Thank you, Joan

mj953 | @mj953 | Jun 12, 2021

In reply to @jmb73 "Hi Everyone, I have had ear pain from a blocked parotid gland for over 10 years..." + (show)

Hello
Why aren’t you see an ear nose and throat Specialist for your parotid issue.?

John, Volunteer Mentor | @johnbishop | Jun 12, 2021

In reply to @jmb73 "Hi John, I am mainly concerned about Gabapentin and if it's a drug that others for..." + (show)

Hi Joan @jmb73, Here is some information I found that may provide some answers for you.

"Newer drugs such as gabapentin, pregabalin, topiramate, levetiracetam, and botulinum toxin-A are promising and effective with fewer side effects, better efficacy, ..." -- Update on neuropathic pain treatment for trigeminal neuralgia: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4727618/

User Reviews for Gabapentin to treat Trigeminal Neuralgia: https://www.drugs.com/comments/gabapentin/for-trigeminal-neuralgia.html

It can be a scary thing when you receive a diagnosis. Here's some information on Parotid Duct Obstruction that may be helpful - https://www.cedars-sinai.org/health-library/diseases-and-conditions/p/parotid-duct-obstruction.html. Did your neuro ear doctor offer any suggestions to try?

larryg333 | @larryg333 | Jun 12, 2021

@lamerex4, Jun 23, 2016
Please describe where the pain "strikes" are felt. This may help us provide suggestions. Thank you.

/LarryG

jmb73 | @jmb73 | Jun 13, 2021

In reply to @mj953 "Hello Why aren’t you see an ear nose and throat Specialist for your parotid issue.?" + (show)

I do see a Neuro ENT for my blocked parotid gland. He told me the surgery is very dangerous because of the proximity to the trigeminal nerve. He said to use heat on the gland and then massage it. I have been doing that and it helps a lot. This pain was different and went from my ear to the middle of my chin. The parotid gland pain is a sharp pain in my ear. I used to think it was an ear infection.