Thanks Jess. My neuro actually didn't brush me off when I said "Atypical Trigeminal Neuralgia" and explained the pain pattern. He agreed with my dentists suspicions, but I'm almost curious to go with more testing to see what comes up.

I find I'm helped by Clonazepam, but it's tough when you have to take it daily for a lengthy period, because then when you want to stop taking it, you have to wean off it which can be tough.

Hi there, my neurologist believes I have ATN too. My pain started off with a shocking, electric like feeling along the gums of the upper left side. Only on the inside near the back molar though. I saw numerous doctors who couldn't diagnose it. About 4 months into the pain, I saw an oral surgeon who biopsied the area. Since that time, the shocking pain when talking subsided and has become dull. Now, the area hurts when touched. It has a tender, soreness feeling to it. It's so weird haha. I am just curious. What pain do you feel along the gum line? Is it on the outside or inside of the gums? What triggers your pain? I hope you are all better!

I 'had' classic TN with electric stabs in the left ear, cheek and jaw. The shocks would morph into a continual burning. I didn't have mouth or tongue pain although movement of my tongue would often trigger a shock. Hope this info helps. Best of luck and hope you have pain-free days ahead.

Todd

HI guys,

I am officially joinging the group here in this forum.

I have ATN or secondary TN from a HSV1 viral infection that was caused by dental work.

I guess the virus lives in my trigeminal nerve and the trauma of the dental work caused it to flare.

It affects the v1 branch on my left side and the v2 and v3 on the right. It has also wreaked havoc on my occipital nerves as well.

Hope to learn from all of you.

I've only had the one attack of TN (thank goodness) but strangely enough, mine too followed a dental procedure. It mostly attacked my jaw along the lower branch of my trigeminal nerve, and was treated with Tegretol.

Thedspeth and Shelley, I have no idea whether my TN was typical or atypical, but I wanted to let you both know that some-one is thinking of you!

I hope you both get relief soon as I sure do remember how nasty those shooting sharp pains can be.

Sending you both lots of positive healing thoughts and prayers.

((((Koala))))) thanks so much for your post and support. I am so bummed that this all seems caused by a dental procedure. It truly sucks especially since I am only half way through the implant procedure.

But I finally think I have some good docs on the case so just hoping they can reduce the pain so I can manage my way through life until this resolves hopefully.

I posted this in another ATN thread but wanted to add it here. I have been suffering for years and also endured the misdiagnoses of migraines, TMJ, and sinus problems - finally after a trip to the ER I went to a neuro who listened to what has been going on and diagnosed ATN. When I researched ATN I was shocked at how my symptoms fit - what a relief to know what was happening to me...........
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Hi - I was also diagnosed with Atypical Trigeminal Neuralgia and was at the point of begging my neuro for just one day of relief from the pain.
He perscribed Lyrica and it is a godsend for me!! The side effects are annoying such as feeling loopy, weight gain and unable to concentrate - but the the relief from the ATN pain in my face is worth it! Not sure if this will help - but I've read that they are just beginning to use Lyrica for ATN, so maybe it's an option you haven't tried. I hope you too can find some relief.. it's truly a debilitating disease! Best to you, Barbara.

What is a dental EMG? Is that the same as an EMG of the mouth? Can an EMG actually reveal TN? (Or are you referring to an MRI of the trigeminal nerves?)

My story is a little long, but pertinent, I feel to help find if anyone else has had the same or similar symptoms and if my symptoms fall within the realm of ATN.

March 2013, I had a stabbing, horrible ear pain. I went to Urgent Care after hours because I couldn't take the pain any longer (about 2 weeks after the pain started). They diagnosed me with a bad ear infection and put me on antibiotics. 2 weeks later, the pain was the same, so I went back to the doctor; who put me on another 2 weeks of antibiotics (I'm highly allergic to most antibiotics, so this was particularly disturbing to me) and steroids. I was able to get in with my PCP, still with the same stabbing pain that had gone on for a month and a half by now. He also diagnosed me with an ear infection! I went to an ENT the next day...he said I never had an infection, that it was TMJ (I'm ****** by now, because I took a month of antibiotics, but that's another story).

Fast forward to Aug of 2014. I went to an Oral Surgeon under the advice from the ENT for the TMJ diagnosis for my ear pain. I had surgery on my jaw joint on 8/19/2014 for the ear pain- NOW THE PAIN IS WORSE! I am still recovering from the surgery and now the Oral Surgeon has referred me to a ENT that specializes in nerves of the ear, but I can't get in to see him until 9/26/2014.

I have since changed PCP (from last year) and walked into my new Primary's office last Friday begging for help. She gave me a prescription of pain pills, prednisone, and neurontin to help me get through until I can get in with, yet, another specialist. So you can understand that for 1.5 years, I have tried everything I could to get the pain under control...

It started out as a dull, constant, severe pain deep in my ear (I can't feel it by touch). I had the surgery for TMJ and now the pain in a shooting, stabbing (like a fork is stuck deep in my left ear), near constant pain deep in my ear. I have moments and sometimes a few hours without pain, even without taking any ant-inflammatory or Rx pain meds....but then I can feel it starting. Sometimes the stabbing, sharp pain is bearable and sometimes it will just get debilitating. I never know when it is going to happen, so I can't plan on doing anything (I won't drive on pain meds, and they seem to work for a few hours). I also don't want to get hooked on narcotic pain meds. I have tried Valium and that tends to help some, for a few hours. Nothing else seems to help. I suspect the prednisone (I just weaned off) and/or the nerontin may have helped a small bit, but really can't tell.

So, after many misdiagnosis and SURGERY, I am still in pain. The last 4 months has been close to breaking me down, physically, mentally and emotionally.

Does this sound like what anyone else has experienced with ATN? From what I have read, people suffering from TN can feel the pain to the touch. I don't have that. I just have sharp, electrifying, sometimes radiating pain coming from deep in my ear and can not determine if anything makes it better or worse.

Please, if this sounds like ATN, please let me know. I would rather educate myself and try and find a doctor to rule it in or out, so I don't have to keep jumping from one specialist to the next and HAVE SURGERY and still in pain...not to mention, I do have health insurance, but these bills are really going to start adding up-and I still have no relief.

Thank you in advance. I really hope I'm onto something; for a diagnosis would give me some hope.

Best Wishes,
Danielle

Welcome freeSpiritDanielle.

Someone will be along to help.