[Donald 2]

This is my situation in a nutshell. I am so new to this (3 days) that any tips or thoughts would be appreciated. Weekend before Xmas, tooth abcess like pain in my upper and lower jaw seemed to trigger with cold ( weather and drink) and with heat (ie cup of coffee ). I see my dentist thinking abcess tooth and he says he doesnt see or recognize anything that raises any flags to him. O.K. so then I start thinking maybe I have a sinus infection even though it doesnt feel like I do. I work the next few days ( yes through Xmas, Im a repiratory therapist in a hospital), all the while with hourly episodes of intense pain on the left side of my face, cheek, jaw, teeth,for about 10 minutes at a time. Following that work stretch, I go to the Medicenter (after hours, weekend) and the Doc there says he thinks I have neuralgia and to make an appointment with my regular family practitioner on Monday. Monday I made a quick appointmaent and was seen by my doctors P.A.,who diagnosed me with trigeminal nuralgia and placed me on neurontin 300mg 3 x a day. I just started taking it last night, today my jaw and cheeck pain is down significantly although there is still a dull ache and toothpain. I guess Id like to know if this sounds familiar? Does nuerontin usually take away all of the pain ? I havent even seen my regular doctor about this yet let alone a neurologist. Do I need to request a neurology consult? How long does a typical episode last? Reading some of the posts regarding TN are scaring the heck out of me. Any thoughts, suggestions? Thank you.. Don

[Bassetcase]

Sorry to have to meet like this, but welcome to the most compassionate and caring forum on the internet.

My symptoms are Atypical so I can't really help you, but I just wanted to let you know that someone will come along soon to assist you. In the meantime read all the stickies that are posted at the beginning of the TN Posts.

My pain is very sporadic and was diagnosed with sinus, ear infection, etc for years and finally had MRI scans done on my head and was then diagnosed with TN. My pain is all concentrated in and around the immediate right ear. Very painful when it hits, but thank God infrequent so far. Go back and try to find my other posts to see if any of it sounds familiar. Or do a search in the forums for the meds that you are taking. I too was terrified when I went home and looked up TN on the internet - so I can truly sympathize with you there. BTW - heat applied to my ear helps better than the tegretol that I was prescribed. It works for some, and makes some worse. You decide if it is worth a try.

Try not to panic, and take care of yourself, hope you get relief soon.

Rhonda

[EE03]

Hi Don,

Welcome, but sorry you are here. Your situation sounds familiar to me, although I wasn't diagnosed for years. I would get the intense pain that presented as tooth abcess and effected the teeth or get the sinus pain without any other symptoms of a sinus infection. I was treated for a lot of sinus infections I didn't have and I have also lost a lot of molars due to pain when they really shouldn't have been reomved. Some anticonvulsants do work really quick and can dull the pain. I have taken neurontin a couple years ago and recall that it did help with the intense pain, although I suspect I was on too low a dose to really know how good it would work. I changed doctors and changed meds and was put on lyrica.

If I were you, I would definately want to see a neurologist, preferably one who has experience with TN. They are best equipped to fix you up with the best meds for the conditon although its sounds as though you got a good Doc and PA who recognized the conditon very quickly. Anyway, check out the TNA website in the stickies. There is a lot of good information in there, and let us know how you get on.

Take care, Ellena

[Donald 2]

Originally Posted by EE03

Hi Don,

Welcome, but sorry you are here. Your situation sounds familiar to me, although I wasn't diagnosed for years. I would get the intense pain that presented as tooth abcess and effected the teeth or get the sinus pain without any other symptoms of a sinus infection. I was treated for a lot of sinus infections I didn't have and I have also lost a lot of molars due to pain when they really shouldn't have been reomved. Some anticonvulsants do work really quick and can dull the pain. I have taken neurontin a couple years ago and recall that it did help with the intense pain, although I suspect I was on too low a dose to really know how good it would work. I changed doctors and changed meds and was put on lyrica.

If I were you, I would definately want to see a neurologist, preferably one who has experience with TN. They are best equipped to fix you up with the best meds for the conditon although its sounds as though you got a good Doc and PA who recognized the conditon very quickly. Anyway, check out the TNA website in the stickies. There is a lot of good information in there, and let us know how you get on.

Take care, Ellena

Thanks Ellena, I am wondering about the tooth pain. I have one tooth that feels like its abcessed, I can only eat on the right side of my mouth, (The tooth is on my left, as is the rest of my pain). How does one differentiate between a real tooth problem and a TN flare up there? Also, if TN comes and goes?, does one stop taking thier meds to find out or is there an obvious lack of pain that would suggest a remission? Thanks alot, Don

[Donald 2]

Originally Posted by Bassetcase

Sorry to have to meet like this, but welcome to the most compassionate and caring forum on the internet.

My symptoms are Atypical so I can't really help you, but I just wanted to let you know that someone will come along soon to assist you. In the meantime read all the stickies that are posted at the beginning of the TN Posts.

My pain is very sporadic and was diagnosed with sinus, ear infection, etc for years and finally had MRI scans done on my head and was then diagnosed with TN. My pain is all concentrated in and around the immediate right ear. Very painful when it hits, but thank God infrequent so far. Go back and try to find my other posts to see if any of it sounds familiar. Or do a search in the forums for the meds that you are taking. I too was terrified when I went home and looked up TN on the internet - so I can truly sympathize with you there. BTW - heat applied to my ear helps better than the tegretol that I was prescribed. It works for some, and makes some worse. You decide if it is worth a try.

Try not to panic, and take care of yourself, hope you get relief soon.

Rhonda

Thanks Rhonda !

[Catch]

Hi Don, sorry to meet you here, but nice to meet you.

I also have atypical trigeminal neuralgia (or neuropathy). I don't get the brief excruciating pain of typical neuralgia, but the constant burning ice pick through the ear pain. I have found very little helps. I've tried heat, and that helps. Smoking MJ can help, especially if done on a daily basis (not very practical for TN, when there are only brief moments of intense pain).

The other drug I found that works is amitriptiline, which can be prescribed as an antidepressant, and sleep aid. My husband takes it for sleep and general pain and I tried it for a couple of nights and it made a difference. I'll be seeing my neuro about an rx soon. Again, it is something to take daily.

I've even used meditation, and it works too, but takes some practice, and you need a few quiet moments to concentrate.

I don't mind the daily dose of whatever, since my pain can come on suddenly and intensely and last for days, go dormant for a day or two, and then come back as a dull ache on my right side for a week or more, getting more intense on some days. When the pain is dull, achy and long-lasting, meditation can't seem to touch it.

Good luck and hope for good things in the new year!

[EE03]

Originally Posted by Donald 2

Thanks Ellena, I am wondering about the tooth pain. I have one tooth that feels like its abcessed, I can only eat on the right side of my mouth, (The tooth is on my left, as is the rest of my pain). How does one differentiate between a real tooth problem and a TN flare up there? Also, if TN comes and goes?, does one stop taking thier meds to find out or is there an obvious lack of pain that would suggest a remission? Thanks alot, Don

I have both the classic type of TN(aka: TN1) and the atypical form(aka: TN2). Sadly, mine is bilateral and affects both sides with all three branches of the nerve. One side is more active than the other, so at least that is good, but I experience pain daily. I haven't had a remission in three years or so and I don't have any plans of going off my meds. I had this condition for a long time before I knew what I had, and early on, I would get months of remission between attacks, but those times are long gone. Maybe thats why I'm so firm about not taking a med holiday. After having so many teeth pulled, I've learned to look for swelling and inflamation in the gums around the suspect tooth, and I always follow up with my current dentist who is very aware of my condition. He has sent me to other dental professionals to verify his findings before anything is ever done and he approachs me with caution and puts up with my never ending anxiety over anything dental related.

Some doctors and TN'ers do recommend that their patients take med holidays, but there are risks involved concerning getting the same pain relief from previously used meds. I've read that you sometimes get the rebound effect and have to increase the med to get the same relief as before, but since you work in the medical field, you probably know more about that than I and you're better equipped to articulate it. I haven't taken one since I started treating with meds. I've had to change meds more times than I can count, but I haven't been med free since I discovered what I was dealing with and finally got treatment for it.

The last tooth that I had a root canal on is still an active trigger for me, even though it has been capped and is dead. I deal with a lot of pain around that tooth, sometimes the electrical type, and others the nonstop boring pain thats associated with this condition.

Sorry for the long response. I get on a roll at times. Hopefully, I've answered your questions.

Take care, EE

[EE03]

Originally Posted by Catch

Hi Don, sorry to meet you here, but nice to meet you.

I also have atypical trigeminal neuralgia (or neuropathy). I don't get the brief excruciating pain of typical neuralgia, but the constant burning ice pick through the ear pain. I have found very little helps. I've tried heat, and that helps. Smoking MJ can help, especially if done on a daily basis (not very practical for TN, when there are only brief moments of intense pain).

The other drug I found that works is amitriptiline, which can be prescribed as an antidepressant, and sleep aid. My husband takes it for sleep and general pain and I tried it for a couple of nights and it made a difference. I'll be seeing my neuro about an rx soon. Again, it is something to take daily.

I've even used meditation, and it works too, but takes some practice, and you need a few quiet moments to concentrate.

I don't mind the daily dose of whatever, since my pain can come on suddenly and intensely and last for days, go dormant for a day or two, and then come back as a dull ache on my right side for a week or more, getting more intense on some days. When the pain is dull, achy and long-lasting, meditation can't seem to touch it.

Good luck and hope for good things in the new year!

Catch, I use meditation too, when its quiet and I can focus. For me, it doesn't change the pain, but it changes the way I experience it. I have been able to give myself a brief break from the long lasting stuff using it. Sadly, I can't reach the state I need to be in quick enough for it to help with the quick electrical shock pain. But when it happens repeatedly, I can usually get it to help a little.

[Donald 2]

Originally Posted by EE03

I have both the classic type of TN(aka: TN1) and the atypical form(aka: TN2). Sadly, mine is bilateral and affects both sides with all three branches of the nerve. One side is more active than the other, so at least that is good, but I experience pain daily. I haven't had a remission in three years or so and I don't have any plans of going off my meds. I had this condition for a long time before I knew what I had, and early on, I would get months of remission between attacks, but those times are long gone. Maybe thats why I'm so firm about not taking a med holiday. After having so many teeth pulled, I've learned to look for swelling and inflamation in the gums around the suspect tooth, and I always follow up with my current dentist who is very aware of my condition. He has sent me to other dental professionals to verify his findings before anything is ever done and he approachs me with caution and puts up with my never ending anxiety over anything dental related.

Some doctors and TN'ers do recommend that their patients take med holidays, but there are risks involved concerning getting the same pain relief from previously used meds. I've read that you sometimes get the rebound effect and have to increase the med to get the same relief as before, but since you work in the medical field, you probably know more about that than I and you're better equipped to articulate it. I haven't taken one since I started treating with meds. I've had to change meds more times than I can count, but I haven't been med free since I discovered what I was dealing with and finally got treatment for it.

The last tooth that I had a root canal on is still an active trigger for me, even though it has been capped and is dead. I deal with a lot of pain around that tooth, sometimes the electrical type, and others the nonstop boring pain thats associated with this condition.

Sorry for the long response. I get on a roll at times. Hopefully, I've answered your questions.

Take care, EE

EE, That.... was very helpful. Although Im in the medical field, this is totally out of my realm. As I havent yet seen a neurologist etc., the experience of those in this forum is very valuable to me. Im sure you folks trump the doctors as a cumulative base of painful experience, with all due respect to the docs of course. I guess Im sadly coming to the realization now, that this is probably not going away. I thank you for your thoughts on tooth pain and med discontinuation or not. I must admit the thought of going off the neurontin is scary because I still have pain with it, but not close to the pain I had without it. Im curious if the situation of many in this forum, ie continually increasing and changing meds secondary to increasing pain, is typical for TN or, are the folks in this forum just hurting more than most with this disease? Any thoughts out there? Im very sure I will brief my dentist. Its unfortunate that so many people have so many teeth pulled only to have the same pain anyway. Im sure, undiagnosed with TN, I would be begging my dentist for relief. Thanks again EE. Don

[Donald 2]

Originally Posted by Donald 2

EE, That.... was very helpful. Although Im in the medical field, this is totally out of my realm. As I havent yet seen a neurologist etc., the experience of those in this forum is very valuable to me. Im sure you folks trump the doctors as a cumulative base of painful experience, with all due respect to the docs of course. I guess Im sadly coming to the realization now, that this is probably not going away. I thank you for your thoughts on tooth pain and med discontinuation or not. I must admit the thought of going off the neurontin is scary because I still have pain with it, but not close to the pain I had without it. Im curious if the situation of many in this forum, ie continually increasing and changing meds secondary to increasing pain, is typical for TN or, are the folks in this forum just hurting more than most with this disease? Any thoughts out there? Im very sure I will brief my dentist. Its unfortunate that so many people have so many teeth pulled only to have the same pain anyway. Im sure, undiagnosed with TN, I would be begging my dentist for relief. Thanks again EE. Don

P.S. Its now a day later and that tooth is absolutely fine. hhhmmm..strange