What were you doing when ATN started?

Hey Group,

Can of you still remember where you were, what the date was, and what you were doing when your ATN started ?

My ATN started 3 years and exactly 6 months ago today. I remember the date because I lived in a different city and my mum came to visit me for easter ! IT hasnt stopped since this date, not even for a second.

I was just a restaraunt having dinner, I cant remember what part of the meal it was... I think I hadnt even taken a bite of my food yet.... WHEN this imense burning started on the left side of my face just above my upper molar teeth. This is the first and only time I had left a restaraunt in the middle of a meal. I went across the street to a 24/7 and got some paracetamol and I gained relief from that..

The rest is now history.. Dentist, root canals, teeth extractions, dental splint, deviated septum surgery, sinus polyp removal, some other nasal surgery I cant remember, acupuncture, physiotherapy, osteopath, triggerpoint injecions, cold spray muscle manipulation, chinese medicine, pain management course, search for medication relief, STIMS... I think thats most of them haha


Luke :-)

Not entirely. However, it was this month, exactly a year ago that I went to an urgent care center because I was certain that I had a really bad sinus infection. The right side of my face (cheek, nose, forehead and eye area) were in so much pain that I couldn't imagine that it was anything else. A week later, the numbing sensation started and my eye was swollen, itchy and red. The urgent care doctor was certain that I had developed pink eye and that I still had a sinus infection and prescribed prednisone to help. This did nothing and by the next week it was even worse so I finally made a desperate appointment with my GP and go the ball rolling. It wasn't until mid-November when I was finally diagnosed and not until January when I was prescribed Topamax, the prescription that actually has worked for me.


Hi Luke,

I remember it like it was yesterday. In September of 2009 I was at a Soccer game for my oldest boy and what I thought then was a bad toothache...Was ATN. I have battled with this for over 2 yrs now. they tried so many different meds that I can not even name them all. I just know that I found out alot of meds I am allergic too. I had the MVD done in February 2010 and a week later they fixed a spinal fluid leak that I got. I was pretty much pain free for a year. Then almost a year to the date, my pain returned. Next procedure was radiation. This lasted all of 3 months. I take 3600 mg of neurontin a day. I was already on 900 mg before my ATN for seizure disorder. So here I am. the surgeon does not feel optimistic in doing any procedure on me. So I will have to learn to cope with it and learn how to manage a busy life with two very active boys. So that is my story. I think many of us can remember that exact moment that it started. Thanks for sharing your story !!!!!


December 2010 I woke up with a pain that was excruciating! I looked desperately for a dentist that would take me right away. I had a tooth extracted and they gave me ibuprofen for the pain and that worked....for a while.

Then I was diagnosed with Lupus March 2011 and suddenly a month or two later the pain came back with a vengeance....on the same side. I knew then that this wasn't a dental problem and started doing research on Lupus and facial pain.

I found trigeminal neuralgia and I had practically every symptom for atypical TN. My doctors remain unconvinced for some reason due to their lack of knowledge of this condition. So now I'm stuck with the label of atypical facial pain.

I am getting treatment and they are taking my pain seriously but why won't they or hesitate to call it what it is? This baffles me.

I don't remember the date or time. It was in the Fall, I think. I was a cocktail waitress and I was sitting in a booth next to the bar counting my tips for the night when all of a sudden it started. It hurt so badly I honestly couldn't figure out what it was, where it was coming from... I thought I would die that night. Somehow I made it home and went to bed feeling sad and afraid that I wouldn't wake up. I was 21 years old.

I woke up feeling fine and stayed fine for while but it happened again. Again, I went to sleep and woke up fine. It went like that for a couple of years but eventually I'd wake up and still have the pain. Gradually over the next few years it stopped going away so easily. Ice worked for a while but eventually that didn't help anymore. Now (20 years later) it lasts several weeks and sometimes a couple of months.

I live my life in constant fear of the pain. I can't even talk about it without getting emotional. I am always fearful that the Prednisone will stop working. I take as little Prednisone as I can get away with. It's a balancing act to get the meds right. Today I'm having terrible pain and it's only noon. Usually I am ok until later afternoon. I upped the dosage of Prednisone but it seems like I waited too long and now it can't get into my system fast enough or maybe I needed to go up 20mg rather than 10? IDK.

Prednisone helps me tremendously. If I get started in time and get the dosage right I hardly know it's there. None of the other drugs help. Sleep is magical. I'm going to an acupuncturist Monday. I do realize how fortunate I am that mine goes away for months at a time and only sticks around for weeks at a time. Also, I'm incredibly fortunate that Prednisone is effective for me. Some of the side effects suck, but most of them are actually pretty cool. I feel this sense of wellness when I take it. I feel physically stronger, more alert, just generally well. But I sleep poorly and I get HOT, really hot, especially at night when I'm sleeping. The side effects are nothing compared to the alternative. I'll take it.

20 years later and it hasn't killed me, although there have been many times I wished it would.

Thank you everyone for sharing such moving stories… I was completing a Masters in art conservation when mine hit. I worked through about half of it with this pain, but it just got to the point where I couldn’t read the papers for research and I havent worked a day in the last 1 year and 9 months. I recently did a pain management course and that has helped me a great deal and also opioids have been a life saver. My qaulity of life is sooo much better than it was 3 months ago. Still, I will never go back to my masters… Im moving on now, with my families help, and I practice my own art, painting and photography. I havent sold any works yet but im getting to a stage where I will be ready to sell some. If you go on the photography sharing site flickr, my username is image2paint :slight_smile: … Ive uploaded about 30 images to here.

I was just sitting at my desk in the winter of 2003. I felt a tightening in the side of my face. I had never felt anything life it. It wasn't excruciating, at first. But, it became a major part of my life within weeks. My first thought was that I had a brain tumor.

This took place shortly after the birth of my youngest child. I held on to work for a long time. My job was great, and so were the people. I loved the respect I received there.

I was misdiagnosed with TMJ until 2009, when the pain had become so horrific, that I had no choice but to go into Pain Management.

Luke, this is such a great topic to bring forward. I've had mysterious tooth pain since 2004. Sometimes the cause was obvious (teeth broken in half that needed to be extracted) and at other times when a cause couldn't be found it was attributed to sinus infections. For years the pain came and went, but I will never forget the day that ATN showed up and never left. It was 29 July 2010. It was a Thursday night and I was eating dinner on the shore of Lake Calhoun with one of my best friends. We'd been planning it for weeks (we are both busy gals and it's difficult to get our schedules to align). Around 8:30 p.m., I felt the most horrendous pain in my teeth. Shannon said that my face just dropped and it was clear that something was terribly wrong. I didn't want to cut our night short just because my teeth hurt again, so we stayed out until 10 or so. When I got home, I called my dentist and he returned my call a few minutes later and was able to see me the next morning (I have a great dentist). I ended up having root canals done on two adjacent fractured and what turned out to be severely infected molars, which did lead to improvement in my symptoms, thankfully. However, the migratory burning, crushing and sometimes stabbing pain has stayed with me during most of my waking hours ever since. It's been quite the roller coaster ride.

On the flip side, I sometimes wonder what it will be like when it finally goes away (because it HAS to stop one day - no one deserves this). I doubt it will be as dramatic as it's appearance, but that's fine with me. :)

Take care,


after the facelift, i would feel pressure and tightness at different times of the day. my right arm would get hot. my neck hurt like… with hot nerve pain. Then there was a lot of fluid build-up. not a normal recoup. It started under the lids, cheeks, neck, jaw and it remains in those areas. its very different now.

I can't remember any specific date, but I know probably 5-6 years ago the pain would hit about once a month or so. Then about 3 years ago it started hitting a couple times a week (each time it hit, it was a full day pain thing) and about 2 years ago, it pretty much just become a constant pain, but there are definite days (usually about 3 a week) where the pain spikes out of control. The days where the spikes out of control happen are increasing in their frequency.

When they first started occurring about 5 years ago, I had a bad feeling about the pain since advil / tylenol (even in the staggered 4 x advil then 2 hours later 2 tylenol did absolutely nothing for the pain.

Similar story for me as far as Dentist, tons of root canals, only one extraction so far, deviated septum repair, 2 sinus "scar tissue" surgeries, numerous medicines of numerous families.

At the moment Tegretol _seems_ to be helping, crossing my fingers. Hoping for one day a "What were you doing when the ATN pain stopped" thread :)