Hi. My name is Kathy and I am 49 years old.

About 8 weeks ago, I had a violent cough. Since I have a history with that going back to childhood, I didn't think much of it, even as a sore throat developed - again not unusual with the coughing. Everything hurt my throat - talking, swallowing, breathing. Then I started to feel a pain I've felt before (in hindsight, of course) in the last few years. The only way I have described it in the past and now is that it felt like someone was jamming a knitting needle upward through the roof of my mouth. I've also had this "knitting needle stab" in my left ear and occasional left temple. Isolated, I would think, "That's a weird pain," and then forget about it when it went away. I finally went to the doctor when the cough had pretty much subsided but the "sore throat" was considerably worse. She thought I might have some kind of infection so she prescribed a Z-pac and a steroid pack. The cough went away and everything else went downhill...

As I mentioned, isolated pains were quickly forgotten. But this time, I got the trifecta - or is there a quadfecta or quintfecta? Stabbing through the roof of my mouth, stabbing up from the outside of my jaw, every tooth on the left side of my mouth felt like I needed a root canal, hot and cold were intolerable on my left teeth or on the roof of my mouth, stabbing in my ear, stabbing in my temple - all at once. This pain continued - wave after wave - for about 7 days. It would come on suddenly and sharply, last a few minutes, then fade away only to start over 15-20 minutes later. Then the twitching started. My left cheek twitched, but on the "inside." I could feel it, but you couldn't see it from the outside. The same with in front of my left ear. Under my left eye has visibly twitched on and off for a few years now. I even missed a day of work because I couldn't stand the pain. I believe this would be highly unusual, but VERY rarely I get the stabbing pain in my right ear and a little twitch in my right cheek, but that's it for the right side.

First thought, as always - dental. About three weeks prior, I had a (very gentle, as always) cleaning, exam, x-rays. All normal. I had been to the dentist before for pain I thought was an infection or something else and he told me there was nothing there. I've had broken fillings, a cracked tooth, a cavity, needed a root canal - I know what that all feels like, but this wasn't the same. Mostly, I remembered having that roof-of-mouth stabbing before.

I saw my chiropractor who said my C1 and C2 were pushed over to the left. I've had neck trouble since college - maybe from an accident when I was 5 in a snow saucer where my neck got stuck bent over to the right. Who knows? She had never seen my neck quite like this and I had slight relief. I saw her three times in the next week and my pain subsided but didn't go away.

I went back to my regular doctor and told her my chiropractor had discussed both TMJ and TN with me. She said TMJ pain is more constant and often dull and achy. This was on and off, wave-like, and really intense. I cried and cried to my husband one night that I couldn't take it anymore. Aspirin, naproxen, ibuprofen - nothing helped. So my doctor said it sounds definitely like TN to her and she started me on Neurontin sent me to the neurologist to find out what was going on and to "rule out" anything else. My appointment isn't until 4/19.

I've had only occasional waves of pain in the last two weeks and nowhere near as severe. Mostly it's the stabbing in the roof of my mouth, sensitive to hot and cold teeth on the left (never the same tooth), stabbing in the ear. If I take a breath of cold air, it feels like it's going right through the roof of mouth into my mouth and making them hurt. Chewing other than soft foods aggravates things sometimes. And the twitching in front of my ear, in my cheek and sometimes into my upper lip (all left side). Sometimes, the left side of my tongue tingles. Luckily, not all at the same time. I don't know - other than temperature - that I could say I have a "trigger." I can't "make it" come on - and wouldn't want too! And, oh! Once the major waves of pain slowed down, the whole left side of my face was numb for half a day!

History of trauma? Well, the snow saucer incident. When I was 45 (3-1/2 years ago), I fell playing tennis and landed right on my face. I had an egg over my left eyebrow, a slight concussion and a broken nose that was pushed to the right. I had a closed reduction procedure after about a week or 10 days. I also had a basal cell carcinoma right next to my left nostril.

Family history? Occasional migraines since 7th grade. I haven't had a full-blown one in many years, but I've had only the "aura" with no headache often. My mother and sister suffer from migraines. My father, who just passed in January (78 years old), had an inoperable aneuryism in the basilar(?) artery on his brain stem and hydrocephalus. He also suffered a stroke when he was 64. My grandmother had an aneurysm in the same place. Hers killed her (90 years old); it wasn't the cause of my dad's death.

I'm very nervous. This is going to sound very weird. I don't want to have this condition, but you know what I'm more afraid of? Going to see the neurologist and having him tell me there's nothing wrong with me.

I'm sorry this is so long. Any thoughts or similar stories welcome. Thanks for listening. - Kathy

Hi Kathy!

My names Crysta and I'm 22 years old. I have a mixture of typical and atypical trigeminal neuralgia. I had a similar journey in finding this out though just like you did. It actually took me a full 3 years to finally get the diagnosis after going to dentists, oral surgeons, my PCP etc. I'm not sure if you have had the MRI or CT done of your brain and face yet but what I think they will do to rule out any other causes of your pain is one of those. I like you had a "trauma" that we thought maybe caused this which was a tree that was struck by lighting fall on me but in the end that had nothing to do with it.
I was diagnosed with TN by my neurologist the end of October - I tried three different seizure medications with absolutely no relief. In January I was sent to my neurosurgeon who decided that I needed the microvascular decompression. I had it done a week later and am now 11 weeks post op and pain free of the god forbidden stabbing, toothache pain. I do still have a burning pain (which is the atypical he believes) but its nothing like it was. I hope for some relief (even though you dont wanna be diagnosed with it) you do get the diagnosis so they can start a treatment & get you on the right track! I have read plenty of stories of people who have had TN and it has been controlled with the medication. Good Luck!