Interesting to see what everyone thinks about how theirs started.
Mine affects the left side, & I also have TMJ on that side, a tooth with an old silver filling recently broke in half on same side, I had a swollen gland on that side of my neck that needed to be removed on that side (it was noncancerous), then a week after that surgery my neck swelled up like there was a baseball underneath my skin, had to be operated on again & it was from another couple lymph nodes just dying! My doc said he's never seen anything like it his whole career or residency. :-/ After the two surgeries the nerves in my face were all crazy. Couldn't feel my neck or chin for almost a year. It's a lot better now, but there are still small spots where it feels sort of numb. Don't know if any of this has to do with it or not. I also have Fibromyalgia, Congenital Spinal Stenosis, DDD, Sciatica, Arthritis, Carpel Tunnel, Chronic Pain Syndrome. I'm just 45, all of this started beginning when I was 39. My body feels like I'm 90 most days. I hate it! :-(

my pains begun about seven years ago during a pregnancy, after a day of severe face pains i went to the doctor only to find out that the baby had died , then one of my teeth broke in the area that the pain was worst, however i went through a terrible labour to have the still born child , then the face pains came back and it never left, the broken tooth was removed and it seemed to intensify the pains. after visiting dentist after dentists, for six terrifying years i was finally diagnosed. These dentists visits make things worst though , because after every visit the pains worsened. a dentist's visit is one of my worst fears lately. but i thank God for life, its been almost two months since i've had a major attack and i sing praises for every day i am pain free.

My ATN began just as I was getting over being sick with a virus. It started as a burning pain on the right side inside my nose and eventually spread over my cheek along my teeth and the whole right side of my face from my chin to the top of my eye. Small movements of my eye made the pain excruciating. Went to an ENT first. She found what looked like an ulcer inside my nose. Those first years it felt like a burning metal rod was being pushed through my nose into my eye. Lately have found that my cheek, chin and lips on that side feel like I am wearing a mask over them. That's neuropathy, and I only noticed that when a do gooder doc decided to change my meds. Otherwise I have normal feeling and am pain free with my regular medication.

Diabetes..it can cause the protective "skin" around your nerve endings to wear away,...thats how I got TN. (ugh!)

I was hoping it is because of my TMJ is not right (still hoping) but I have had problems with my teeth on that side due to interferon treatment and having kids as well. All my trouble started after a medical tx but IDK if it caused it or just brought the problem forward.

Also the first big attack did come the day after I'd finished with one of my boys birthday parties, I'd been extremely anxious about the party but made myself do it so my boy wouldn't miss out. My teeth felt overly sensitive and it worked up to excruciating pain in the left side of the face which was unrelenting. I iced up my face and accident and emergency doc and dentist and general doctor said not sinus or teeth but TN.

Mine is hereditary. My father had it. Hopefully I haven't passed it on. My girls are 41, 32 and 29 with no signs yet. Mine was presenting, even though I didn't know what it was, by the time I was 40.

NZmumof3,

My very first ever attack also came 3 days after an extremely stressful/anxiety inducing accident at work, and I can't help but think the two are related! I tend to think of it this way, although it is just a theory: perhaps my blood vessel was already looped around my Trig. Nerve and maybe had been for years. But, with an event as emotionally taxing as that one was, it pushed something over the edge and caused additional restriction of the nerve, resulting in the first ever showing of TN pain. Some say that emotional stress or anxiety is not related, but come on, our whole bodies are connected, emotional triggers can cause increased heart rate, constriction of blood vessels, and a whole gamut of other physiological reactions. My theory is not necessarily that an emotional stress can cause a blood vessel to suddenly loop around the nerve, but that if it's already there, it makes sense to me that it could certainly make it restrict more than it ever has before and initialize the demyelination of the nerve, resulting in TN pain. Right?

NZmumof3 and CarrieDawnS mine started around the time I began to recall memories of childhood abuse so I am 99% sure it was caused by stress/trauma/anxiety.

Friend is Neuro -Biologist-True- Thinks many are brought on by stress and poor autoimmune-no proof- but good source of info.

I don't know if anyone will reply? I noticed the last recent reply was 8/11/2014. Anyways, I'm 45 years old and I was diagnosed with TN just 4 months ago but have been dealing with pain for 2 years. I had and MRI and my doctor said MRI shows that I don't have a blood vessel pressing on nerve and my nerve isn't damaged. So why do I have TN? Doctor said probably from excessive dental work. Well I started going to the dentist because of the pain. Before the pain started I hadn't been to the dentist in like 10 years! So it can't be from excessive dental work! I'm really scared that maybe TN is the first sign of MS! I'm really really scared!

Dear Evadecember,
I'm very sorry that you're in pain. I can take a whopping amount of pain but constant pain just plain wears on you. Most often people DO end up having an excessive amount of dental work done before being diagnosed with TN. I know my Dad did and I've read any number of stories on here that say the same. IMO it's the TN that brings on the dental work. Something in your face hurts. Therefore it must be because of something in your mouth. I couldn't tell you how many times I went to the doctor for a non-existent ear infection. How dare they tell me that there's nothing wrong with my ear!! It's my ear and it hurts like nine kinds of h**l! Turns out they were right, not a thing wrong with my ear.
Try to avoid stress if possible. Many will say that stress is not a trigger. When I was working to close up the place I had worked for 23 years I was in pain almost 24/7. Since I have become unemployed and have finally come to terms with NOT going to an office every day, hmmm, no attack in over a year! No meds now either! Makes me think maybe stress has something to do with it after all.
Wishing you peace and no pain
PS-usually it's MS followed by TN.

I went to have a "small" cavity filled. The dentist injected lidocaine into my trigeminal nerve. The left side of my face swelled up like a ballon and was so painful. He said it would go away. I can honestly say, he changed the course of my life that day. Many, many, many Dr. appointments and 4.5 years later, I'm still in constant pain. I did try and drink my pain and misery away, which landed me in rehab. I can happily say I'm sober now, and believe that alcoholism has a genetic component, but that injury sure awakened the beast. Who's to say if it may have stayed sleeping? I ran marathons, competed in triathalons and was devoted to yoga before this all happened. I have not been to a dentist since and that was only my 2nd cavity (so not much prior dental work). Boy, that felt good to get my story out! I wish you all a low pain night.

Juls

hello i am new to the group and i have been finally diagnosed with this debilitating condition. which was misdiagnosed since 2008. it all started in the left side of my face after many er visits, pcp visits, neurology visits and md saying "there is nothing more we can do for you" they put me in 900 mg of gabapentin 3x per day and done. the pain well as they called my everyday headaches seven days a week well drink the pills and done. i was very frustrated. now the pain has returned but this time on my right side of the face. let me just say this is the worst pain i have ever felt in my life. and it makes me so upset that these md's dismissed me all because they refused to get research for an answer and now my condition has gotten worst. i have no life i go nowhere i could barely work and no one understands. sorry just venting. it is very frustrating when doctors just wont listen

evadecember,

I'm so sorry for your pain and diagnosis of TN, I know it all can be overwhelming! From what I have heard and read, even when there is a vessel pressing on the Trigeminal nerve, it may not always be visible on an MRI, and sometimes goes undetected. Sometimes the blood vessel is so small or is hidden behind a larger one that it goes unseen on the MRI. You could maybe get a second opinion from another neurologist or even a neurosurgeon who might be more specifically trained at deciphering those images?

The other thing is that if there truly isn't a blood vessel encroaching on your nerve, you could have what's called "A-Typical Trigeminal Neuralgia". What kind of pain do you have? Is it more of a constant burning ache 24/7 or does it come and go with electrical shocks? My understanding is that the electrical shocks can be moreso a sign of typical Trigeminal Neuralgia where a vessel is impeding on the nerve.

Lastly, if there were signs of MS it probably would have shown up in your MRI and your doctor probably would have noted it to you. That is one of the things that was ruled out when I had my MRI as there was no "demyelination plaque" or something like that. And like someone else said, I've heard it is extremely rare that TN show up as the very first symptom of MS. But I would recommend maybe a second opinion from another neurologist who might be able to ease your mind with some of these questions.

A great resource with tons of info on TN is the book Striking Back by Weigel and Casey. Ok, I know that's a lot of info but I know how it feels to be scared and have questions, you're not alone! Hang in there.

Carrie