I was looking at various postings and saw yours describing bilateral facial pain that was very much like mine (numbness, tingling, deep pain on both sides). I was diagnoses several months ago. Anyway, I was wondering if you got better (I hope the answer is yes!) and if not what medications you are taking or how you are coping. A little about me: I am a 43 year old lawyer and mom living in NYC. This is no fun! All the best, Marnie

Hi I have ATN also, I have had it since 2004. I just wanted to add to the "phantom smell" postings. When my flare ups are particularly bad I get the wonderful gift of smelling dirty cat litter! It's just awful! No matter where I am or what I'm doing it's constantly with me. It can last from a day to weeks. When it feels like it's went on forever I tend to get pretty agitated about it since it's not much fun trying to eat and that's what you smell. The first time I had my episode I thought for sure it was me or my clothes smelling that way. I couldn't understand why I smelled it since I always wear body spray. I went around work that first day making my co-workers smell me and swear they would tell me the truth if it was me! Needless to say they thought I was crazy! I have brought this up to several different drs. I have seen thru the years and they all have never once addressed it or explained it to me. Thank goodness for this board or I would never have known for sure it is connected. I've learned just to take it day by day as I do my ATN and know the really bad days will subside.

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?)

I just started on tegretol this week (thank goodness its helping) and I was smelling that too. I was about to ask my husband if there was something I should know about

dmplaura- I've found many of your posts very interesting. I've been sufferring with atypical TN going on 4 years now. For the first 2 years or so it only affected the left side of my tongue and was moreso a constant burning irritation- so for those first couple years I tried to ignore it, mainly because my dentist would shrug it off as burning mouth syndrome although he saw no visible signs of irritation. I'm wondering if you even have burning mouth, mainly because your case sounds so similiar to mine. After those first two years my burning pain began to rapidly spread throughout the left side of my face/head- from the tongue to the gums (especially where my wisdom teeth had been removed many years ago), to my canine tooth, eventually the entire inside of mouth, down my throat, then deep boring into my ear, than up the left side of my head into forehead and temple, just recently it has spread to my eye. Besides the intense deep burning, I feel an unrelenting pressure in my sinus cavities, especially in my ear and under my eye. I feel like I have a massive cold everyday-- I recently read that some physicans believe TN can begin from untreated sinus infections causing nerve damage...creepy stuff.

I also experience that metallic, iron-like taste at times. Multiple times it tasted like blood enough that I checked in the mirror for bleeding gums. As for smells I never really thought about it, but many times I complained of a very foul odor like mold or old vomit, sour milk perhaps. The weather also effects my TN as well, I can feel OK and step outside into the humidity and by the time I'm in my car it has flared up. Hell maybe I do have burning mouth but since they diagnosed me with aTN they've blamed that. Got MVD surgery in a month...scared ********.

Hugs to all who have contributed to this thread as of late!

I take Clonazepam still, plus Cesamet, and while this seems to keep the pain and attacks down, I still occasionally find myself laying the head down on something cold for a couple minutes, or applying pressure to a spot to stop the pulsing pain sensation (oddly, that works for me for relief sometimes).

Someone asked about EMG... I think that's what the test was called? I had pads stuck to points all over my jaw/head, and had to do movements with my mouth. Computer collected data, then specialist jotted down trigeminal neuralgia on my tick sheet (which actually had 12-13 different conditions listed from specialist's findings - wasn't a nice time in Laura's life to see all that, I had just turned 30 and my life hadn't even really started!). Add to that an MS diagnosis came a few months later which put a LOT into perspective and answered a lot of unknowns.

I hope everyone's been doing well and has been having lower pain or more pain free days

I'm a male in his 50s and I was diagnosed with a Chiari Malformation 11 years ago that turned symptomatic after a minor surgery requiring general anesthesia. Using evolved potentials and shocking my left wrist, the delay in transmission was noted right at the base of my neck where it is suspected the 5mm herniation should have told the God that operated on me to accept my prior films and use a flexible intubation. This has now progressed to a peripheral neuropathy for about 6 years. It's not too bad but I cannot possibly jog. I lose the spacial connection to my feet and begin to lumber along, for lack of a better word. In typing this message I am losing dexterity with my hands and making many typos by the end as my hands feel like they are floating over the keyboard. If I type for an hour I will want an ice bag for my hands to cool them and they will also ache as I have myofascial pain and Fibromyalgia.

About 5 years ago while eating I drank something cold and the lower left side of my jaw was introduced to what I believe is called Breakthrough Pain and my lower teeth on the left and my tongue felt life I had them in an electric socket. My neurologist is a top one and he diagnosed glossopharyngeal neuralgia and possible TN. He has since changed that to ATN.

A few months ago I started having episodes every 2-4 weeks of the entire right side of my face a little numb and flush. Not on fire, but from the neck, down the shoulder, through the teeth, up into the ear, around my forehead and into my eye socket. I had this previously a number of times but to a lesser degree on the left side.

I have also had episodes every few weeks of each quadrant of my teeth feeling for hours like I had a stabbing toothache with electrical sensations directly to the midline tooth. None of this though were like the few feelings of that Breakthrough Pain that would be unbearable.

I have had all MRIs done and all dental work checked. Also, with the Chiari malformation, even if they thought a MVD could do something I was told by a few neurosurgeons that they would not operate without a decompression first, and I am not a prime candidate, nor do I want the back of my head removed.

Does hitting all 4 quadrants (individually) in the mouth at times on a thankfully infrequent basis as well as having a constant discomfort/pain in my left ear sound like ATN, AFP, or both? I also have a vestibular deficit that is into the mildly abnormal zone on a rotary chair test along with downbeating nystagmus and some beating of my eyes when gazing to the far sides.

Thanks in advance,
Mike

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.

Danielle, I am so sorry to read of the horrible pain and horrible experiences you have had. What a nightmare.

I have ATN that happened after dental work on the right side.

My symptoms are somewhat similar to yours. Much of my pain is in my right earl it feels like a huge hot potato is being shoved into my ear. I also have pain just outside of my ear, a little into the jaw area and behind the ear.

I often hear people with ATN complain of ear pain.

BTW, my ENT originally thought I had a TMJ problem. BUT, I had a TMJ problem on my left side and it was very different. I had a clicking sound and much less pain. To my shock, I called the TMJ assoc. And they said the less you do for TMJ, the better! Perhaps some muscle relaxers and an occasional neck massage...That's it!!!!

Back to ATN....your symptoms might very well be from ATN. Have you had an MRI? You really should see a neurologist. Lyrica, Neurontin and Elavil are all meds known to help with ATN.

I myself, rub a cream on my face. In the cream is Neurontin, lidocaine and capsaicin. I also take a med by mouth very similar to Elavil. This has been helpful, but I do have bad times....but less often.

If you haven't visited a neurologist yet, now is the time to try! And avoid surgery or any other drastic moves.

In the mean time, does a heating pad help a little? I usually got a little help by putting a heating pad on my face.

Please continue posting here, but also visit www.livingwithtn.org. Check out ATN and also Geniculate Neuralgia.

Fingers crossed that you get some pain relief soon!!!!