1. < Brain & Nervous System

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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jmb73 | @jmb73 | Jun 13, 2021
In reply to @larryg333 "@lamerex4, Jun 23, 2016 Please describe where the pain "strikes" are felt. This may help us..." + (show)
@larryg333

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

/LarryG

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The pain is behind my ear to my face and it's sharp at times. When I went to Centra care, the pain was an 8 and it was making me sick. Now that I am on prednisone, it is an ache that becomes worse if I talk or eat too long. I am still using heat on it. Any help would be appreciated.

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mj953 | @mj953 | Jun 13, 2021
In reply to @jmb73 "I do see a Neuro ENT for my blocked parotid gland. He told me the surgery..." + (show)
@jmb73

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.

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I had parotid surgery in NYC by the chief surgeon of head and neck at NY PRESBYTERIAN HOSPITAL. Yes it is dangerous if it’s not done by somebody that knows what they are doing or doesn’t have a lot of experience and I mean a lot. My surgery took 5 1/2 hours and my scar is so tiny. My tumor was benign thank God. And my doctor was also a plastic surgeon. If it were me in your position I would get a second opinion From the very best Dr . There is no reason to be in pain if it can be helped.

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1 reply
jmb73 | @jmb73 | Jun 13, 2021
In reply to @mj953 "I had parotid surgery in NYC by the chief surgeon of head and neck at NY..." + (show)
@mj953

I had parotid surgery in NYC by the chief surgeon of head and neck at NY PRESBYTERIAN HOSPITAL. Yes it is dangerous if it’s not done by somebody that knows what they are doing or doesn’t have a lot of experience and I mean a lot. My surgery took 5 1/2 hours and my scar is so tiny. My tumor was benign thank God. And my doctor was also a plastic surgeon. If it were me in your position I would get a second opinion From the very best Dr . There is no reason to be in pain if it can be helped.

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Thank you for your advice. I will research surgeons here in Orlando.

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1 reply
larryg333 | @larryg333 | Jun 13, 2021

Two suggestions for anyone with TN pain:

You can try:

1) Applying a ZTlido (lidocaine 1.8%) -- lidocaine patch to the area along the trigeminal nerve. These can be cut to appropriate size. Be sure to keep and properly store any remnant(s) for future applications to save money.

2) Applying a CBD topical cream, or taking CBD oil buccally.

Please consult your treating MD prior to using the above. Hope these provide you some relief.

Do let us know how any of the above affect your TN pain. Thank you.

/LarryG

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Amanda Roe | @amandajro | Jun 15, 2021
In reply to @jmb73 "Thank you for your advice. I will research surgeons here in Orlando." + (show)
@jmb73

Thank you for your advice. I will research surgeons here in Orlando.

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@jmb73 in the event you are interested, the link below will lead you to a list of doctors at Mayo Clinic in Jacksonville, FL who's focus is on treating Trigeminal Neuralgia for you to explore.

- Trigeminal Neuralgia: Doctors and Departments:
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/doctors-departments/ddc-20353350?locations=Jacksonville%2c%20FL#e60ad0d0bc354936a881a57de90ea8a3

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pollysparrow | @pollysparrow | Jun 24, 2021

i HAVE IT i HAVE HAD IT A LONG TIME THEY SAY THERE IS NO CURE BEEN TO DOTOR AFTER DOCTOR NO HELP WAS TOLD IT CAN BE CAUSED BY STRESS WIND DAMPNESS OVER ACTIVITY SO JUST DEAL WITH IT NO STEROIDS FOR ME COLD CLIMATE CAN BRIG TI ON AND A LOT OF DIFFERENT ISSUES I HAVE A FEW ON GOING CONDITIONS BUT FROM WHAT I HAVE SEEN STRESS WILL GET IT GOING HAD A BRAIN MRA CT WENT TO DENTIST NOTHING TO DO WITH ANY OF IT If you go any where go to MAYO IN RODCHESTER I did TAKE CARE BLESSINGS Barb Baker Northern MN

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mfratt | @mfratt | Jun 25, 2021

Are you familiar with the program The VIEW with Whoopi Goldberg. One of the host said she had it and went to a Temporal Mandibular Joint doctor which indicated if your head is not sitting right on its axis you will have this problem. I had it for a short period but it went away. Just a little bit of information. Hope it helps.

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paulboe | @paulboe | Jul 15, 2021
In reply to @cdharris "My name is Cathie Harris. For the past 6 years my husband Eddie has suffered with..." + (show)
@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

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I do not no if this is were to ask anything but your husbands pains are same as mine,I have taken several different meds very little relief have had decompression surgery lasted a few months this past March 2021 had CyberKnife surgery pain is worse now than before. trying to get into Mayo to hopefully get some answers and relief .

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 15, 2021
In reply to @paulboe "I do not no if this is were to ask anything but your husbands pains are..." + (show)
@paulboe

I do not no if this is were to ask anything but your husbands pains are same as mine,I have taken several different meds very little relief have had decompression surgery lasted a few months this past March 2021 had CyberKnife surgery pain is worse now than before. trying to get into Mayo to hopefully get some answers and relief .

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Hello @paulboe, Welcome to Connect. I'm sorry to hear you recent CyberKnife surgery didn't help with the pain.
Here is the contact information http://mayocl.in/1mtmR63 if you have not already called Mayo Clinic to make an appointment. Mayo Clinic experts may be able to consult with your current care team with respect to the diagnosis and proposed treatment options.

Have you asked your doctor for a referral to Mayo Clinic?

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annco2709 | @annco2709 | Sep 9, 2022

Hi, I recently had a few lightening bolt type episodes of pain shoot across my face. It happened 2 days in a row, and then I had a terrible ear ache. I waited a week and went to my doctor. My ear was fine. I still have horrible ear pain and occasional "pressure" feeling in my check, all on the right side. I saw a neurologist who said it is Trigeminal Neuralgia, and has ordered MRI's of my brain and neck. I am also on gabapentin right now. Since the face pain I have started having all kinds of twitching in my calves, and I also have been experiencing involuntary movements like my hand will jump or my shoulder will shrug, and now I am terrified that this is something more serious, like ALS. I do not notice any weakness, and I know my anxiety is at an all time high. I am just wondering if anyone has experienced this? With it settling mostly in my ear it makes me afraid it is not Trigeminal Neuralgia.

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