Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

Type II Trigeminal Neuralgia

Information

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.

Location: subject-specific group
Members: 500
Latest Activity: on Saturday

Discussion Forum

Wearing glasses

Started by Judy D'Arcy-Evans. Last reply by christine on Saturday. 33 Replies

Does anyone else find having to wear your glasses hurts your face on bad days of pain.I need my glasses to see as I have several mixed up eyesight problems but find them touching me very painful.Just wondering how common this is. ?Continue

medications and treatments for atypical TN

Started by Camia. Last reply by Camia Aug 23. 11 Replies

I have atypical TN. and now I think I have added type 1 as I the shocks have been increasing on the left side of my face where the burning and numbness is.  I have tried pretty much all the meds available.  I am concerned about MVD having been given…Continue

ATN Doctors - Updated List

Started by Brad. Last reply by Brad Aug 23. 6 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

Mayo Clinic Minnesota

Started by Brad. Last reply by Darkas10 Aug 22. 3 Replies

I would like to try and go to the Mayo Clinic in Minnesota. My neurologist does not think it will help.Do any of you have experiences going over to one of the Mayo clinics?Continue

Comment Wall

Comment

You need to be a member of Type II Trigeminal Neuralgia to add comments!

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 


Moderator
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.


Moderator
Comment by Richard A. "Red" Lawhern on May 19, 2015 at 1:47pm

Grecio, you asked a number of questions, on which I'll try to shed a little light.

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

I wonder if there is a correlation between cervical, neck, spinal injuries, fusions, etc. and TN?? Isn't there about a 2% incidence of ATN after a person has had Shingles?? Also, is there some indication that ATN can be MS related??

I haven't seen the 2% figure, but Post Herpetic Neuralgia fairly often presents with Shingles.  The distinction between PHN and other Trigeminal neuropathy is the initiating agent and the course of treatment:  generally PHN responds to a course of Neurontin over several weeks to months;  Trigeminal neuropathy (Type 2 TN) doesn't always.

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

Has anyone heard of any Botox trials for TN in the US? I hear of successful treatments in Europe, but Botox is not approved for TN treatment in the US??

Botox is still being used off-label for TN as far as I know.  There is a trials database at US NIH where you could search for ongoing trials of Botox for all causes.

_____

We have a Neurologist that uses Botox to treat migraines and cluster headaches. I wonder if a doctor tried it would he inject the Botox into the trigeminal ganglion??

I rather doubt that Botox would be injected directly into any nerve ganglion, though I suppose that practice might have evolved since I last checked in depth. Botox is a useful but toxic substance.  From what I read in medical literature, it will generally be injected into tissues adjacent to the nerve, rather than into ganglion.  The reported experience of TN patients with Botox has been quite spotty.  A few have reported being helped, but the majority have not. 

Regards, Red

Comment by Grecio on May 19, 2015 at 12:57pm
Red, thanks for your reply.
Her symptoms have never changed through all the 5 years treatments (except the 3rd radiofrequency stimulation). By the way, is radiofrequency stimulation and a rhizotomy the same thing?
The block by the dentist I guess, is on the teeth side of the TN damage.  Maybe the TN damage is on the teeth side which, to me, looks like a dental problem like a deteriorating bone or something.
However, the fact that the pain is upper and lower suggests that the TN damage is at least at, or prior to the ganglion.
I saw a lady on Youtube with TN. She had the Trigeminal nerve cut behind the ganglion. She said her face is totally numb now but that it was preferable to the pain.
If Cherry could have the dental injection everyday, the that would be worth it (assuming we could afford it). Our pain doctor told us today that it would not be possible to have the injection very often because the medicine has epheneferine (sp) in it.
I would bet there is no data anywhere that indicates how often a patient could have that treatment.
Perhaps in the future, a "port" could be established so that the medicine could be administered daily without a new needle site.
Also, for breakthrough pain, a patient could go to the dentist and get 8 hours relief. 
Cherry currently is on a Fentyl patch (75), and 60 mgs of Hysingla ER daily.  This is controlling her pain to a 3-4 most of the time. I have called Emory Hospital once a week for 3 weeks to see if they will do the PNS, but they never call me back. She also takes Baclofen 20 mg  3x per day and Lyrica 100 2x per day.
I think PNS will turn out to be the best treatment for most TN2 sufferers.  I wonder how much it costs?? It can't be cheap.
Thanks again Red for all you do. You are a Godsend....!!!



Comment by Grecio on May 19, 2015 at 12:54pm

I wonder if there is a correlation between cervical, neck, spinal injuries, fusions, etc. and TN?? Isn't there about a 2% incidence of ATN after a person has had Shingles??  Also, is there some indication that ATN can be MS related??

Has anyone heard of any Botox trials for TN in the US? I hear of successful treatments in Europe, but Botox is not approved for TN treatment in the US??

We have a Neurologist that uses Botox to treat migraines and cluster headaches.  I wonder if a doctor tried it would he inject the Botox into the trigeminal ganglion??

Comment by Granny on May 15, 2015 at 2:21am

Grecio, I am so sorry your wife has most likely as "RED" responded suffered from neuropathic injury from some of the procedures. I am ATN type 2 and atypical GN mixed with a history of tmj and cervical disc surgeries. I am not a candidate for procedures or MVD as told by one of the neurosurgeons recommended on this site at a teaching hospital who will only do true TN, stabbing and electric shock-like pain, not the constant building pain. Yet, I read about so many with true TN who get MVD and are offered other procedures do not get a lasting result and sometimes get worse. That was what I was told. This surgeon did not want to make me worse even though my neurologist suggested RF.

     I followed a lot of posts on this site on success with PNS. I am very interested in something like this. I have had to delay my search for a doctor due to back surgery and nerve injury. I think you may be on the right track for your wife. Sharon


Moderator
Comment by Richard A. "Red" Lawhern on May 12, 2015 at 9:59am

Grecio, a couple of thoughts.

Injection of long-acting anesthetic deep in the mouth might be considered a form of "nerve block" by a lot of doctors.  But this block doesn't seem to have been used on the ganglion itself, and it's unlikely to be effective for long periods (days or longer).  Likewise, from your description, I'd intuit that there is more than one focal point of injury involved.  So what you're observing is the numbing of the peripheral nerve distribution, not a treatment of the root sources of the pain.

With your wife's history of multiple procedures, my intuition is that she likely has multiple neuropathic injuries, some of them caused by the Gamma Knife and RF Rhizotomy.  That's a tricky and difficult combination to treat, and further surgery is truly unlikely to help.  So the priority needs to go toward finding a combination of medication and locally-administered topical anesthetic creams, that make the pain more manageable.  Lidocaine based creams are appropriate for some patients, some of the time.  But they aren't particularly useful as the only form of treatment.  They should be ancillary to TCA meds, muscle relaxants, and/or anti-seizure meds known to be effective against facial neuralgia.

While I understand the logic behind the neurosurgeon's changing of the diagnosis to atypical face pain, I don't agree with it.  The Medical Advisory Board of the US TN Association has defined atypical face pain as "facial pain of obscure origins".  It's not truly a diagnosis, because there is no recognized program of effective treatment that grows out of the label.

I'd suggest that you talk with a neurologist about compounding medications into a topical cream that can be targeted on specific areas of your wife's face.  That approach has helped some (not all) patients whose pain is neuropathic in character.

 

Members (500)

 
 
 

Help Us Help Others

Support Ben's Friends

Bens Friends

Does Your TN Pain Have You Considering Suicide?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

 

Ben's Friends is a peer-to-peer network

To get support, give support. 

Blog Posts

TN+MS: but is it really MS?

Posted by Irishone on August 30, 2015 at 8:34pm 0 Comments

Gift Store

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service