I was diagnosed with TN eight years ago after four months of torturous pain, many pain meds and many trips to the dentist and doctor. I was put on Amitriptyline. The pain went away and never came back, even after I stopped that med after two years...

Until this spring. I started having shooting pains in my molars on the left side. Unbearable. So, once again after many pain meds, three rounds of antibiotics, a root canal and many trips to the dentist I am still in pain. I was REALLY hoping it was the tooth and I would not have to go down this road again. But here I am. I will start with my GP tomorrow.

I am wondering if dental issues can aggravate TN?? The pain has lessened since the root canal but it has also changed form and location a bit.

I am also wondering if anyone has had symptoms disappear for so long and return years later??

I am exhausted from being in pain for two months. I am also nervous and upset about having to deal with this again. My mother has MS and TN. My grandmother had TN. I have had an MRI to rule out MS. It was fine. I have also experienced other neurological symptoms in the past. My left arm for a few months was inexplicably sore. That left on its own. I experience strange sensations on my face and head, such as the feeling of a hair on my skin or crawling sensations on my scalp.

Just looking for any feedback or support.
Thanks

I got Atypical TN after dental work. I've had it a good year. I am on meds. The medication has helped. Recently, I feel better...after enduring a good year of horrible pain. Even now, a cold wind will set the bad pain off. So for me, it hasn't stopped...it is still there. I rely on the meds to keep the pain away.

Regarding your situation....I'm thinking a dental procedure can definitely set if off or off again, especially in someone prone to this problem.

I hope you can get on meds to control it and I'm thinking since it has stopped before, it will stop again.

Can you tell me more about the pain you experience? Where is it? I am so confused about the pain I am experiencing. What type of dental procedure caused yours? Also what type of medication are you on?

My pain is sporadic but more of dull, constant, pulling type of pain. It does radiate. And once it starts it is usually there for the rest of the day in some form or other.

Any info would really help.
Thank you

My pain seems somewhat similar to yours....first I'll tell you a bit of what happened to me:

How it started is hard for me to talk about. I had an onlay fall off a tooth. I had NO PAIN whatsoever. However, I was going out of town for awhile and wanted it taken care of.

I went to a dentist that was on my insurance. She was not recommended to me, etc.

She insisted that instead of replacing the onlay, she put on a crown. However, she had a freakishly hard time putting on the crown. Many problems, errors and re-dos took place. At one point, she put on a crown with permanent glue and told me to bite hard and the thing broke immediately.
It took her about two hours to get it off after that and the tooth got sore.

There was more weirdness...many, many weeks went by, it got more and more sore. The owner of the practice took over...more work was done and then suddenly one day in the dentist's chair, I had the WORST pain in my life in and around that tooth (tooth #31). It was deep and electrical. It was in my jaw and in my ear (right side). I was shot up with a ton of novocaine..as I was crying and starting to scream.

It only got worse from there pain wise and treatment wise. I got a root canal and the tooth was pulled as various dental "professionals" tried to figure out what went wrong.

However, I still had the pain....24/7 boring, sharp pain, where tooth #31 was, in my jaw and in and around my right ear.

I was put on Percocet. The pain was always bad, but some days it was EXCRUCIATING. I began to notice that a cold wind hitting my face would set me off and I would start crying. Only being perfectly still, with capaisin cream and a heating pad on my face would bring some relief. Some days, you would see me with burns on my ear.

The last oral surgeon who saw me told me the truth. I was so lucky. He sheepishly admitted that I needed to see a neurologist and in so many words told me that I had been hurt by one of my dentists.

Flash forward:

I went to a neurologist and tried many medications. I went to various websites to see what others were taking. I tried MANY meds and my stomach is now a war zone.

My pain was not like folks who have TN I or typical trigeminal neuralgia. They have extraordinary horrible pain that sort of comes and goes. And there is an electrical quality to it.

Mine only had that electrical quality to it at the dentist office.

My pain is like a deep boring stabbing relentless pain. I was dx'd as having Aytpical Trigeminal Neuralgia.

After trying various meds, my doctor settled on Desipramine tablets and a compounded cream that I put on my face 5x a day. In the cream is Gabapentin, Lidocaine and Capsaicin. I take 1/2 of a Percocet for breakthrough pain. I also did acupuncture for several months at the beginning, which was somewhat helpful.

It took ABOUT A YEAR to get on the right meds. THREE WEEKS after starting the cream. I noticed improvement.

Today, I am better! I have hope! If I forget a dosage of the cream...I feel pain. If a cold wind hits my face...I feel a lot of pain.

But, day to day, I am more normal and am very grateful.

Check out the websites listed at the beginning of these posts and also there is a good book on the topic called "Striking Back."

BTW, I am not too fond of the dental profession after this HORRIBLE EXPERIENCE. Chose your dentist CAREFULLY! Be extra careful about procedures and injections. Make sure your dentist understands your concerns.
And if you haven't already, find yourself a good, caring and smart NEUROLOGIST!

Wishing you good luck!

Thank you for taking the time to explain your story to me. This is just such a frightening experience to go through. I know a lady who was left in serious, chronic nerve pain after a botched dental surgery. It affected the rest of her life.

I do not think my pain was caused from dental work. As my first flair up was eight years ago. Although that was in a different place in my mouth. This time I was in severe pain for months and probably had a root canal that wasn't necessary. Or maybe it was. Who knows at this point! Interestingly it was on tooth #18, the mirror tooth that you had work done on. Anyways, my teeth are apparently fine now so here I am back to Trigeminal Neuralgia. I am trying Amitriptyline, as that was what worked last time. I am only at 20 mgs and still increasing it but so far I have good days and bad days. I have a referral to a Neurologist and am gathering as much info as I can.

Based on other people's experience, I believe mine is Atypical as well. My mother has TN and she has MS. I have had an MRI and everything looks good. I have never had any MS related symptoms. My great-grandmother also had TN.

I am only 37 and am a single mom with two jobs and a house to look after. Having chronic pain is really not easy to deal with when I have so many obligations. And it is really frightening.

All the best to you as well.

I am incredibly happy to find you both!!!!!
I too went through unnecessary dental work and a whole lot of testing before reaching the conclusion that my pain must be nerve related.
Just barely avoided sinus surgery during this whole debacle.

It's been a very long year with multiple root canals and both my 2nd molars on my right side being extracted. What I don't understand is how none of the dentists and oral surgeons I saw suggested I go see a neurologist...

I did get referred to an ENT and was suggested sinus surgery, 2nd opinion said I didn't need it, third opinion said it could help...
I am so happy today that I didn't go through that.

Now both the upper and lower 1st molars on that side have been root canaled.
And the pain didn't cease, so another round of ct-scans... and the root canals looked perfect.

Living inbetween Europeand the US the past couple years I was self-medicating with european otc codeine, didn't help much. Hence considering ripping out the 1st molars.... but then what? The next two teeth?

I became very depressed and helpless, lost my job because I couldn't function with the pain.
Also have had migraines on the same side most of my life, if you can imagine TN and migraine together...
I almost killed myself a few times just to escape the pain. Many many a night spent underneath the shower just because the constant flow of water over my head distracted from the pain.
Sit down, then stand up the sit down again, all in the tub until there was no warm water left.
About 5 months ago I took a valium before a long flight and was amazed at how all the tooth and facial pain went away for the following 3 days. So I found someone with a valium and took another one a few weeks later and boom, all the pain was gone. Not even a strong vicodin ever helped like that.

SO finally I found a decent GP who mostly treats women and was incredibly sympathetic to my situation and automatically said it sounds like TN and atypical migraine. Thank God!!!

I am now taking Lyrica 75mg twice daily for the last 4 months for the nerve pain and 5mg of valium for breakthrough pain and migraine attacks.

The Lyrica has done wonders, though I still have attacks, just less often and much less severe.
The valium always helps when I need a little extra and has been incredible for taking migraine away even when it has completely taken over.

I realize this is quite quite long, but I want to relate with you what has happened. If you have any questions or want to talk some time do let me know. I'm still researching and am not completely satisfied with my diagnosis and treatment, especially the Lyrica side-effects (my hair is thinning drastically).

Thank you both!!

Hello, getting right to the situation, 5 years ago in 2008 I had a bicycle accident where i flew over the handlebars while going about 20 mph. I landed on my chin, and broke my jaw, cleanly as it happened. all that was need was my jaw to be wired and wait for the jaw to mend.
this was in early July, in early September I started to notice what I thought was itching on my scalp - for the next 2 years I went to a dermatologist who prescribed topical (steroidal) meds, steroid shots, creams, antibiotics, patch tests, skin biopsies, until it was determined (?) that my problem was neurological. for the last three years i have been going to a migrane specialist who is convinced that I have "ice pick" headaches" and prescribed Nortriptyline, which made me sick no matter how long i tried to stay on it and adjust.
I am now going to a neurologist who thinks that the accident did something to the trigeminal nerve in my brain stem and has prescribed Tegretrol. (other meds that I can't tolerate are topomax and any of the trisclaytes)
There are days that for no apparent reason my scalp feels like someone is ramming sewing needles into it, all over. My doctor's position is that the Tegretrol should help (I'm now taking 900mg a day)
This condition is not just a minor nuisance,it is incredibly painful and strikes for no apparent reason.
Any ideas, clues, thoughts?
thank you....

I'm not sure if I have occipital or Trigeminal - I have been taking Tegretrol as a mood stabilizer which now is doing double duty in terms of my pain management dr, and dermatologist and therapist "think" is going on. I'm at the point where I don't think these electric pains that shoot across my scalp will end. I woke up last night scratching or rather clawing my scalp.
I've taken Lyrica and it drove me crazy - Nortriptilyn (sp) which made me feel horrible, at least the only side effect of the Tegretrol is sleepiness throughout the day (which actually can be a problem since I am a teacher)
I am thinking of changing my neurologist because i honestly don't think he takes this seriously.
In the NYC area there should be a center, or hospital that treats the diagnosis and treatment of neuralgia.........
it's been 5 years and is slowly wearing me down..

Dear Glyde:

Welcome to NeuroTalk...

I'd like to do some sleuthing if you don't mind...I have some questions for you.

What kind of shampoo do you use? One with selenium in it, or zinc? Or Coal tar?

Do you know what antibiotics you used? Some cause nerve damage. (neuropathy).

Do these attacks follow bicycle days? Is your helmet tight, which may be compressing nerves in the scalp?

Have you had tests for B12 and Vit D? If not get your numbers, and see if either or both are low. Don't accept "normal" from your doctor because labs still report levels below 400pg/ml as normal and they are really LOW.

There are nutrients that help nerves heal. Major ones like Omega-3s are typically low in US diets, so increasing salmon, and other foods that provide these or taking fish oil (or Krill oil) will help with nerve repair. B12, folate and B6 are the other cofactors for this.

My first impression is that something you do or are exposed to is the culprit. Keeping a log/journal with food entries, activities and matching that up with when the pain attacks come may be helpful.

Your work/hobbies? Exposure to solvents, chemicals or pesticides?

Heat also can trigger nerves, esp when they are compressed or damaged. So don't stand for long periods under the hot shower.
Use luke warm water or keep your head and neck out of the stream of water if hot. Don't lie on a heating pad either. (this is tempting, but in the long run it flares nerve firing). A wise chiropractor educated me about heat and pain.

Have you tried ice compresses at the back of your neck? Do they help or make things worse?

[QUOTE=mrsD;1029311]Dear Glyde:

Welcome to NeuroTalk...

I'd like to do some sleuthing if you don't mind...I have some questions for you.

What kind of shampoo do you use? One with selenium in it, or zinc? Or Coal tar?

Do you know what antibiotics you used? Some cause nerve damage. (neuropathy).

Do these attacks follow bicycle days? Is your helmet tight, which may be compressing nerves in the scalp?

Have you had tests for B12 and Vit D? If not get your numbers, and see if either or both are low. Don't accept "normal" from your doctor because labs still report levels below 400pg/ml as normal and they are really LOW.

There are nutrients that help nerves heal. Major ones like Omega-3s are typically low in US diets, so increasing salmon, and other foods that provide these or taking fish oil (or Krill oil) will help with nerve repair. B12, folate and B6 are the other cofactors for this.

My first impression is that something you do or are exposed to is the culprit. Keeping a log/journal with food entries, activities and matching that up with when the pain attacks come may be helpful.

Your work/hobbies? Exposure to solvents, chemicals or pesticides?

Heat also can trigger nerves, esp when they are compressed or damaged. So don't stand for long periods under the hot shower.
Use luke warm water or keep your head and neck out of the stream of water if hot. Don't lie on a heating pad either. (this is tempting, but in the long run it flares nerve firing). A wise chiropractor educated me about heat and pain.

Have you tried ice compresses at the back of your neck? Do they help or make things worse?[/QUOt

Thanks for the reply - I haven't bicycled in a long time, I have spinal stenosis and am waiting for surgery in April of 2014. I have had a occipital nerve block a year ago and the symptoms went away for about 6 months - i had another in April of this year and no luck, symptoms remained, like needles being shoved into my scalp.
The antibiotic that the dermatologists put me on was Doryx- essentially for it's anti-inflammatory properties.
I have had the same sense that you have, that this condition is due to something in my environment, but I have had patch tests to check sensitivity to cosmetics, dyes etc in shampoo.
I've used every shampoo known to man and Amazon.com - I don't use any with the ingredients you mentioned.
I am concerned about sodium laural sulfate though and try to stay away from sulfates in general. I'm wondering if it is related to my using hair gel (alcohol free and hair spray - with alcohol, even though the patch tests were supposed to show sensitivity to these as well)
Last night i woke up scratching/clawing my scalp....this time was so bad that I left red, raw marks at the top of my forehead.....
the dermatologist says it's not dermatological, and the neurologists can't figure it out except to increase the dosage of Tegretrol to 900 mg a day.
Thank you so much for your response and concern