Hi, I am a new member :)

Hi, I don't quite know how to do all this, however, my denial broke today and I now know I have trigeminal neuralgia. I got it on March 25, 2013 from a simple upper left molar extraction from an oral surgeon. Well, the tooth wasn't coming out so he had to cut my gum and cut the tooth into sections. I got the nerve damage either when he cut my gums or during the shot, I will never know for sure. It started with constant numbness in the gum near the extraction site, then on and off pain in the tooth near the extraction site, I was told by dentists nothing wrong with the tooth. Then burning pain in lower jaw on and off. I went to the dentist this Monday and had an upper right molar cavity filled. I required to shots of novacaine cuz I am a baby :). anyways, since this dentist visit, around 3 lower teeth hurt and I was horrified to feel my very first zingers this evening. One after another , about 2 mins apart, mild pain, but now I know for a fact I have trigeminal neuralgia. I know my condition is not as bad as many of yours and my heart goes out to all of you , who have had to have much worse than I have experienced. I am just worried if this is the start and I will get more and more pain in the future. I got some low dose neurotin from my PCP, however, I have never taken it yet. I don't know what to do. Do I go straight to the mayo clinic? I don't want to waste any time with docs who don't know anything about this stuff , but pretend to. Thanks so much for reading and listening, it means a lot!!!!!

Hi gal-- wow does this sound familiar....I was diagnosed four months ago--I think it might have been dental--I had a lot of work done the year it started...

here is what I discovered--hope it helps--

I live three hours from Baltimore--they have a tn clinic at Johns Hopkins-I wanted to go there right away--but when i called they told me that there was no need-- they said many cases respond to medicine and go into remission--some for long periods of time-- they told me I did not even need a neurologist-- first step was to start tegretol (you might ask your doc about that) It is a med that works so well at first they use it to diagnose tn. If it works--you have it! I went on it and within a week the pain stopped and has not returned... I only needed a low dose (200 mg/day) because we caught it right away... I am off it and in remission right now.

The one important thing is to get a good MRI to rule out any nasty cause of the tn like ms or a tumor...make sure you the tn protocol in a closed machine with a high tesla (magnet strength) like 4.0 I think it was...the weaker machines won't show it as well--I traveled to a med center a few hours away to get a good mri... my other advice is try not to panic--I did for awhile -- but there are a lot of people who manage to live a normal life with the help of meds... hope this helps!!! --tacocat-- aka cindy

Thank you, thank you, thank you, thank you!!!. Tacocat,lol.... So many cat names on here, I am surprised I didn't pick a cat name, having 2 of my own. anyways, thanks sooo much. I actually cried while reading your comment because I am panicking. Everything you wrote is incredibly helpful , if you were here I would give you a big hug. How do I get over the angry stage? In one day, this oral surgeon ruined my life, is how I feel. Perhaps , because when he found out, he was aloof and stated, well, nothing I can do about it now, but otherwise everything looks good, he said and spent a whole 40 secs with me....I wish I could sue, but nobody will take the case, say they are hard to win cuz these things can happen to even good dentists, blah, blah.... anyways, thanks again.... my pcp gave me neurotin, funny I asked for tegretol from her because I read about it and she stated, oh no, that is so strong, I want to start with the one that gives the least side effects first.... what good is that if it is not the best med for the condition???? thanks again , you Rock and everyone here Rocks!

Go to someone with experience in this and DO take your meds. xxoo

Thanks again tiger!! Hope your day is going well :)

As we often say We are glad you found us, but sad that you had to.

nicely stated saraiderin, Yeah, I guess all of us belong to a club , that if we had our way, we would not be members of...Thanks for the welcome Saraiderin!!! Real name is Elvera :)

Is there a way I can print out these comments? I would like to print out taco cats comments below to show my PCP physician so I can get 200 mg tegretol script from her. She is a bit stubborn and doesn't like to be told what to do. I asked her for tegretol a long time ago , but she stated," no that is the last resort, that has a lot of side effects and will turn you into a zombie, so we will try that last."... But I 100% believe you tacocat when you say, a) its a low dose b) your body eventually (one week) gets used to it and most importantly, c) IT WORKS, it sent you on a hopefully very very very lonnnng remission :) Thanks so much!!! aka Elvera :)

for the anger: http://www.livingwithtn.org/forum/topics/an-important-reminder-for-yourself-and-your-loved-ones-caretakers

For the Oral Surgeon who ruined my life in ONE appt.? I had to get over it..... Its like carrying him around on my back if I am not forgiving him, but not letting him back in my mind again - done

Get the NUMBER ONE neurologist and the NUMBER ONE neurosurgeon from the doctors tab.... travel if you have to!

Here is top 40 of our favorite meds to try --- research is your best bet here - read alllll you can!


Topical Meds are very important to try- to keep the coo coo meds down on lower levels to function better!

Thanks so much Kc Dancer Kc!! In your situation, was it from an extraction or root canal? Can I ask who YOUR number 1 neurosurgeon and neurologist is? I believe Dr. Ken Casey was your neurosurgeon, however who was your neurologist? Thanks so much for the links addressing the anger part, and the meds part, you rock !

aka, Elvera :)

I started getting the zingers on July 3rd this year and of course went to the dentist who sent me to a specialist that was enlightened. He told me he was pretty sure it was TN and to see a neurologist or go to ER if I couldn't get into one. The ER gave me dialauded and baclafen and it worked for two weeks then came back worse than ever. On a blog a woman said her husband had been pain free for over a year by seeing a UPPER CERVICAL chiropractor. At this point I had nothing to lose so I went to one in LosAngeles and am out of pain. If you are still having zings, give one a try. They usually give you a free evaluation. Sometimes "too good to be true" does work. Best of luck to you.

Start your medicine right away. My neurologist said it is imperative to get the pain under control as soon as possible. The longer you wait, the harder it is. Also Tegretol does have a lot if side effects but works the best. I’ve been on it a few months and have adjusted to the side effects except being very tired. I’m on 800mg and 900mg of neurontin and doing ok. Find yourself a good neurologist. I have an amazing one in my hometown and I’m going to the Cleveland Clinic for pain management. They are wonderful there. Good luck!

Why must we suffer, and lose our dignity? To what end. You no longer fit into social norms. So we can't work because the medication and frequent sever, debilitating attacks ripping at you face. All you want to do is run from the pain. You live on the good will of our society, and adding nothing in return. That is were I am today and every holiday, and every day inbetween.