Not completely convinced I have TN
 

I was recently diagnosed by two Neurologists in Philadelphia (one at Penn and one at Jeffereson) that I have Trigememinal Neuralgia. I'm not completely convinced that I have it as my symptoms seem different than what I read. My symptoms are a dull ache for most of the day with occasional bouts of searing pain above teeth 4 and 5 which are both root canalled and one even had an apicoe surgery. My teeth (4, 5 and 2) are all very sensitive to pressure. If I press on them with my thumb they hurt. Tooth number 2 is very sensitive to cold and so my endodontist said I may need a root canal but since I had already had tooth 4 and 5 root canalled he though maybe I should see a Neurologist to see if it is TN. Has anyone had a similar situation? I am now on Tegretol but it bothers me that I may be on this medicine for no reason if I really don't have TN.

Are the meds helping?
 

Has the tegretol helped with the shooting pain since you started taking it? If so then you may have TN. The dull aching pain can be a number of things. I am suprised the docs have not tried neurontin. It usually helps with the dull pains. If that doesn't work maybe lyrica might. If those things do work you may also have ATN or AFP. One thing that would be a good idea is to go to the TNA website and order the book striking back. It is like the the bible for TN. It also helps with determining your pains. Dental work is sometimes a precursor to TN. It can trigger an underlying problem as it did mine. Read the sticky's on the top and you can ask as many ? as needed. Welcome whether it is or isn't we are here for you. Jen:grouphug:

Tegretol
 

I've only been on Tegretol for less than one week and today is only my second day on 600 mg (we were ramping my dosage up). Since I've been on the Tegretol I have not had the searing pain although sometimes it feels like I am going to have it :(
I guess I need to be patient.

so the teg. medication has helped? how long have you been dx with t.n. ?
how long has the pain been bothering you? do you see any pain management doctor? has this all come about over dentists and that led you to a neuro doc or why did you go to neuro to begin with because of the pain and symptoms??? I wouldnt want to jump onto neurotin till I have to .
You mentioned pressure causing pain then that I would say is a trigger ... hot ,cold.. triggers. do get the book striking back like jen suggested it is much helpful to you as well as any doc and dentists and family , friends... clues them in and a life saver of sorts. forget the root canal unless it shows on xray you need one... forget it!!!
sorry you are going threw what you are. keep us posted and hope to chat again soon with you.
peace earthwide
Burntmarshmallow

I'm dx'ed with TN and your experience sounds very similar to mine.

I've lived with TN for 23 yrs...the last six with pain management.

I had a large cyst, then surgery. About six months after that, the TN made itself known to me and has remained the same since. It's not gotten worse, not gotten better. It just stays the same.

I had many root canals, teeth removed, etc. due to the TN. I wasn't dx'ed and it was a search for the pain...having more unnecessary surgeries and dental work.

There are triggers that I've learned to avoid, and that helps but only to a degree. I also have the constant pain, then get the worse "zaps".

I wish you more than well, and hope you keep us informed.

KD

Well I have had tooth sensitivity for years and eventually and dentist decided to give me a root canal and then it got infected and I had to have it retreated and then an apicoe done. I then still had discomfort so they root canaled the tooth next door. They were now suggesting another tooth be root canalled so I went to 2 Neurologist for their opinion. They both said TN even though my pain is not stabbing. I have severe sensitivity to hot and cold on one of my back teeth on that side. I also have a general ache around teeth 4&5 almost all the time. At times I have a SEARING pain like a hot iron on the area that has been my main concern. I started the Tegretol around 10 days ago but am now ramping down off of it as I experienced too many side-effects (extreme tiredness and double vision). I went for a third opinion from a DMD who is part of a Oral and Maxillary surgery group who treats many TN patients. He said my symptoms do not sound like TN at all. He is now going to treat me with nortryptline as I also have migraines but on the other side of my head. He has been working on a theory that if you don't have TN you can treat the pain like a migraine and it will work as it has on many of his patients. I start the new med on Monday so I guess wish me luck.

Try this first
 

I am also on Nortriptyline. I am going off because of side effects. It is an older drug primarily used for depression but also for it's pain relieving qualities. My doc hates it. It causes weight gain and for me too many head games. Short term memory etc. I also had numerous dental work done , saw dentist at least 7 times for tooth pain, had two root canals, endontist and oral surgery. Ended up pulling two teeth. If you havent already please go to TNA site and read some of the articles.http://www.tna-support.org/:winky: Another idea is to go to this site and take the test. It is very helpful https://neurosurgery.ohsu.edu/tgn.phpl. Trust me no doctor wants you to have TN. You may have some pre TN symptoms, no one can tell. My doc also put me on trileptal because it has less side effects than tegretol, but it is a sister drug to it. Since you are getting off the drug, be conscious of your pains. See if the are better worse or the same. I really hope that it is not TN for your sake. Keep us up to date on what's going on with you. Take good care, Jen;)

phillyinpain ... you know a giant huge wish of luck is the least a fellow face pain pal can do. sooo. . . MUCH MUCH GOOD LUCK TO YOU PHILLY :hug: . your screen name sounds kinda like fully in pain . check out the stickes at the top of the posts here.. like Jen wrote lots of helpful things and sites to search. I truely wish I could help more but Burntmarshmallow cant help to much right now :( ... have you tryed posting at another place? I will private message you so check your box. and again A LOUD EARTH SHAKING BURST OF ENDLESS GOOD LUCK.May your road to answers be short and your solutions to controll be fast and ever-lasting.
Peace
Burntmarshmallow
P.S. thanks for keeping us informed and updated , your in our thoughts and good wishes.