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Type II Trigeminal Neuralgia

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Type II Trigeminal Neuralgia

For support and exchange of ideas and info for those caring for someone, or suffering from Type 2 Trigeminal Neuralgia, also referred to as Atypical Trigeminal Neuralgia, or ATN.

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Discussion Forum

ATN Doctors - Updated List

Started by Brad. Last reply by Richard A. "Red" Lawhern Feb 1. 10 Replies

Hello, I am looking to compile an updated list of Doctors who understand ATN.  We have the doctors tab above, and many might be great for TN but I am looking for those who specialize with ATN. I live in Idaho but I am willing to travel…Continue

Surgery

Started by Trshi. Last reply by Trach Jan 13. 22 Replies

Has anyone had any surgeries that have been successful?Continue

Medications Used for Type 2 (Atypical) TN or Trigeminal Neuropathy?

Started by Richard A. "Red" Lawhern. Last reply by Eileen Dec 19, 2015. 210 Replies

This discussion thread invites members of the group to identify the medications they use for Type 2 Trigeminal Neuralgia or Neuropathy.  These types of pain usually present as 24-7 throbbing, aching, burning pain instead of volleys of intense…Continue

Tags: T, atypical

Sphenopalatine Ganglion Block

Started by Brad. Last reply by Brad Dec 16, 2015. 15 Replies

Hello Everyone, I have TN2 pain all day every day for the last 18 months due to a root canal procedure.  I have tried 5 of the typical meds, seen 8 doctors, acupuncture, upper cervical chiropracter, etc. I had a Sphenopalatine Ganglion Block this…Continue

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Comment by Tree69 on December 19, 2015 at 11:44am
This is about infection of the vagus nerve and trigeminal nerve. Harvard professor explains hypothesis he has formed regardinding Vagus and Trigeminal nerve being crainial immuno nerves. I believe my TN2 is from infection, always have. By working on clearing out infection in ENT my pain levels and symptoms are slowly disappearing. I have had to change my diet and do lots of research on self help to get here.
http://thelowhistaminechefpodcast.libsyn.com/chronic-fatigue-from-v...
Comment by crashgirl on October 22, 2015 at 3:50pm

Actually before I had the MVD, steroids actually made the pain worse , but I found that anti-depressants helped the most with ATN, I used Celexia with very good results and still do because I still get a slight twinge here and there and also I still get boring ear pain, especially on a day like today when my allergies are off the hook!!!  

Wendy

Comment by bocajodes on October 22, 2015 at 2:02pm
I was on Zorvolex for a little but it did not work at all.
Comment by mdpurcey on October 22, 2015 at 1:37pm

DiDi I do. Yes it does help some. I take indomethacine which is from what I've been told a fairly strong medication they use for arthritis. 

Comment by DiDi on October 22, 2015 at 12:34pm

Does anyone take an anti inflammatory medication in addition to nerve pain medication?  If so, what do you take and does it help?

Comment by Granny on June 1, 2015 at 3:40am

     Trsh, I also have neck pain with my ATN. I have a history of tmj-surgery and cervical fusion 3 levels that have all contributed to my ATN. I get botox of the cervical muscles that are in spasm from my neuro. I am due now and have been postponed from 3 to 4 months. I get them once every 3 months. He does go into my scalp to treat tmj and ON trigger points of the muscles that contribute to my facial pain. I am beginning to feel pain radiating up the backside and side of my neck muscles now as I am due for injections. He does not know the sites for TN and at this time is telling me you can not inject a nerve but he does injections all around my ear, scalp, temple and jaw line along with the neck.

     Anyone know of new research for botox sites for TN?

     Check your pillow. Watch your posturing. Forward head position can cause more spasm in the neck muscles.

     Sharon

Comment by Granny on May 21, 2015 at 11:58pm

     Grecio, I am responding to your question regarding cervical problems and all the muscle problems that go with it and if it affects ATN. I say yes. Dental issues too including tmj. I think once all those nerves to the face begin to establish their own pain cycle muscle spasm from tmj and neck problems can aggravate it.

     I do get botox from my neuro for my cervical muscles. He also does the muscles that relate to tmj and ON for me but does not inject anywhere near a nerve but I get a lot of injections throughout my scalp. I have asked him if he knows where to go for ATN and right now, no because you can't inject a nerve with botox. My ATN was presenting with atypical GN and the aggravating factor for me was a full blown tmj episode with it. So now the tmj is settled down and so is the ear pain. I had tmj surgery in '86 which reduced my bite from a normal 44 mm to 28 mm. It always feels tight around my ear like a rubber band is trying to close my bite down. These muscle problems from tmj and all my cervical fusions have caused limited motion. I stretch. Use cold or heat.

     But I have to admit this ATN has a mind of it's own. I get flare ups that are still maddening without tmj or cervical muscle spasms. I was also in remission from ATN for decades. It returned about 3 1/2 years ago. Slight pain shooting into my cheek, under my nose and along my jaw line. No spasms into my temple which would be tmj. I am sure most of my docs think my history of tmj and cervical fusions contribute to mine but that was not how it all returned. The facial pain came first. It is a circle of pain now and after ATN flared up I got severe tmj spasms which also seemed to aggravate the atypical GN. I have the bitter taste. That was also one of the first symptoms of the GN along with the ATN returning. I was having just nerve pain first, then the muscle problems from my past issues with tmj and cervical herniated discs which are now fused began to flare up again.

     I am still hoping for remission but have found at lease 40 to 50% relief with botox and meds and then there are days it is just low lying. I will be choosing to try this PNS. I think it will be difficult to find a doctor that does it without traveling and I do not believe Medicare pays for it. I think I saw a figure of around $60,000 to have it done. That is a guess.

     I am 59 and have been around and around the block and I know I have learned from PT's and docs that muscles in spasm can compress nerves.

     I think chiropractors are treating TN and ATN with cervical adjustments. I can't have that because I am fused. Another sufferer of ATN wrote in regarding this and was getting temporary relief.

     Sharon 

Comment by Richard A. "Red" Lawhern on May 19, 2015 at 4:08pm

redbird2448 broadcast this message to the group: 

I have had TN2 for about three years now. Its behaved itself really well with just a low dose of Gabapentin at night. The last couple weeks about three times a week, I am getting severe sudden pain diagonally across my left sinus. It really make me jump and afraid to move, then its just gone. Sometime I will get three in a row, but they all subside pretty quickly. When they hit, it goes though my mind that this may be the set that kills me. It is pretty scary. I am getting ready to do my final five year scan to be clear for my thyroid cancer returning. Once thats over, do you think I need to get another MRI? I had one three years ago, and all it showed was a migraine pattern whatever that is. I don't know if I should worry about this or not.

===============

Pain across your left sinus should be investigated with an ENT, I think. I am not a medical doctor but from what I hear from patients, it seems to me that this pain is more likely a sinus infection or some form of neuralgia, than anything related to the thyroid procedure you went through.  Re-scan with MRI or CT-scan will likely be needed to evaluate for sinus infection, anyway. The MRI can be upgraded to generate very fine grained resolution in the area near your brain stem. 

I'm not personally familiar with the term "migraine pattern" in the context of MRI.

Regards, Red

Comment by ravenm on May 19, 2015 at 3:53pm

Hi Grecio,

 I have had pretty severe shingle twice prior to getting ATN, so I would somewhat support that especially since I continually get the sympathetic meuro pain left over from having shingles. Ah the "suck it up". My surgeon gave me Botox as one of my alternative treatments when we decided that the use of medication alone would not be enough to control my TGN. Since then I have had 2 Gammas, and an MVD. I still take Gaba,Topamax, and just started a new med which I am not sure if the problem is related to my TGN or my TIAs. However, even dealing with the flare ups that are coming back, I am dealing with life as a Thrive, not Survive. In the last 5 years I take the good times and I have been able to work, fly in a fighter jet, run in a zombie themebed obstacle run (my shirt says My Brains, My Fight), and I will continue to be my best advocate. I scour every post, and read Reds post religiously. Then I apply what works for me. You will do the same, and find your success. your brains, your fight. It's a mantr that will get you past the most stubborn doctor (I have fired a few), the most horrible nights ( please, let me get to tomorrow) and the most bleak news, find those d@#m happy place pictures. Hang in there. Where once we were few and called crazy, now we are proven, and we are many!

Comment by GinRebekah on May 19, 2015 at 3:06pm

Gregio, I can sympathize and relate to your wife's pain.  I am also on Fentanyl and Hydrocodone to control my pain and like hers, it keeps it down to a 3-4 most of the time now.  I also respond to the local anesthetic used for dental procedures.  Even though part of me still believes that dental procedures caused my ATN or Atypical Facial Pain (depending on which doctor you talk to), I actually look forward to having any additional dental procedures done on the affected side of my face simply for the few hours of pain relief that it provides.  My pain specialist believes that my cervical spine problems are the origin of my pain but I will never have surgery after watching my husband's life turn into a living Hell after his failed.  I did manage to talk a Neurologist into doing Botox but he would not inject close enough to the affected area due to his fear of temporary/partial paralysis on one side of my face.  I told him I did not care what my face looked like, if it would help the pain but unfortunately, it did not help at all.  I hope your wife finds a miracle for relief soon.

 

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