Hi.This is my 1st time posting.I live in the UK.I cant believe how common my problem is.I went to the dentist as my tooth hurt,no problem so far.Anyway to cut a very long story short,i had an infection under the tooth,which eventually ended up being extracted,it was my L7 on right (Molar). The root was left in situ until removed some weeks later.Anyway before root was removed i knew something wasnt right,as the pain wouldnt go.Then i had numbness and mild electric shocks to face. I had different sensations all the time,and some of these did not appaear straight away,none of it did really,just the pain,numbness and 'oddness' ,which can only be explained as my face didnt feel like my own.Ive had crunchy glass feelings,burning mouth,teeth feeling like they are on ice,the list goes on. I am currently on 3 nortriptyline per day,i cant seem to tolerate gabapentin,neurontin and one other ,so rely solely on nortriptyline.Has anyone tried any other drugs that do not have horrible effects. I have severe dry mouth,have gained a little weight,and i cannot have a proper 'wee',it seems to bring on 'urinary retention'. And what other stuff do people in constant pain do to help themselves. I am in the 8th month of my injury,which i believe is probably nerve damage to lingual nerve ,and may have brought on a neuralgia.Nothing has been determind yet,even though i have had MRI. My doctor also calls it CRPS,but i dont think hes ruling out trigeminal neuralgia. I try to remain hopeful that i will recover,but that feeling can diminish when im not feeling ok. All new ideas welcome. Thanks

ps. i did put this elsewhere on another thread,and the moderators kindly diverted me to here

Hi,

Many people with Trigeminal Neuralgia start their journey off in the dental chair. TN can perfectly mimic tooth pain. Mine does almost every day!
And then there are the people that have nerve injury from dental procedures--I have heard many of their stories. They walked into the dentist a normal, healthy person and left in chronic pain.

Yes it is shocking how common these problems are. You will hear from many people that are in the same situation. You may be better off on the Trigeminal Neuralgia board.

It sounds like you are taking all of the right steps. Unfortunately receiving a concrete diagnosis is difficult. Many doctors will not diagnose Type 2 TN. Unless you have the classic Type 1 symptoms you will probably receive a "atypical facial pain" diagnosis or a "neuropathy" diagnosis.

Unless there are compressions showing on the MRI most doctors will not go any further.

From your description of your pain, sensations and locations it sure sounds like neuralgia to me.

I have bilateral Type 2 TN that started off in one tooth. Long story short I had an unnecessary root canal and realized it was not my teeth. A year and a half in and I am still convinced sometimes that there must be something wrong with a tooth. But then the next day it may not hurt at all and maybe a different one will.

Nortriptyline is helpful to many people with this type of neuropathy or neuralgia. I am on Amitriptyline and it has been very good to me. Another drug that is helpful is Lyrica.

What dosage of Nortriptyline are you taking and how long have you been taking it?

Hi jane,yes i was told 'atypical facial pain' and have also had crps.The mri said the trigeminal nerve looks unaffected,as does its major divisions,however my doctor would shrug his shoulders at this,he doesnt think an Mri is conclusive.Today my ears hurt,my gums are 'hot'.i wish i had said no to 'digging around for root',perhaps i would not be on this site,who knows.What is bilateral t/n. I take 75mg of nortriptyline,is it worth considering changing to amyltriptyline,or are they one of the same. The anti seizure pills just dont agree with me.I have been on my meds since march 3rd,i hate it,i tried to lessen them by 1,and within a few weeks my pain had ramped up a few notches,and i had odd sensations running through my teeth,like they werent quite mine.I am going back to dentist to try and get bite guard as im sure i am clenching in the night,as my jaw has been hurting more so these few weeks.Symptoms go,and come back,and you think oh im getting better,and then it hits you again (bangs head on wall). I must be more optimistic,and hope i will get better.I have reported the 2 dentists to the GDC ,so am waiting for a reply. But most of all,i want my life back.

Many people with Trigeminal Neuralgia start their journey off in the dental chair. TN can perfectly mimic tooth pain. Mine does almost every day!
And then there are the people that have nerve injury from dental procedures--I have heard many of their stories. They walked into the dentist a normal, healthy person and left in chronic pain.

Yes it is shocking how common these problems are. You will hear from many people that are in the same situation. You may be better off on the Trigeminal Neuralgia board.

It sounds like you are taking all of the right steps. Unfortunately receiving a concrete diagnosis is difficult. Many doctors will not diagnose Type 2 TN. Unless you have the classic Type 1 symptoms you will probably receive a "atypical facial pain" diagnosis or a "neuropathy" diagnosis.

Unless there are compressions showing on the MRI most doctors will not go any further.

From your description of your pain, sensations and locations it sure sounds like neuralgia to me.

I have bilateral Type 2 TN that started off in one tooth. Long story short I had an unnecessary root canal and realized it was not my teeth. A year and a half in and I am still convinced sometimes that there must be something wrong with a tooth. But then the next day it may not hurt at all and maybe a different one will.

Nortriptyline is helpful to many people with this type of neuropathy or neuralgia. I am on Amitriptyline and it has been very good to me. Another drug that is helpful is Lyrica.

What dosage of Nortriptyline are you taking and how long have you been taking it?[/QUOTE]

[and have also had crps.]

Is the CRPS in remission or resolved?
What areas did you have it in?

I suppose it could get re-activated by certain procedures..
For more info on that possible scenario check out our RSD/CRPS forum.
http://neurotalk.psychcentral.com/forum21.html

My journey started out similarly to yours and it is a very common one for people with Trigeminal Neuralgia. My pain has worsened in intensity and location over the past year and a half.

It started off in one molar. It spread to all teeth top and bottom on the left side, then up into my cheek, jaw and ear. About four months ago I started having the same issues on the other side (that is bilateral-both sides). I now have pain in my teeth, jaw, cheek, ear, tongue, roof of mouth and up into my temple and eye.

The tooth pain jumps around. It can feel like a toothache, like someone is trying to rip my tooth out, it can dance around, ache, bore and vibrate.

Yes the pain comes and goes on its own free will. It may set in for one hour, one day or one week. One tooth may hurt one day and a different one the next. Or maybe my tongue will hurt and none of my teeth. Or maybe nothing will hurt. It does seem to follow patterns that I now know very well. And it always starts in a couple of distinct places.

In general the anti-seizure medication works well for Type 1 pain (fast, electric shocks)

And tricyclic anti-depressants are used more for Type 2 (longer lasting, constant, aching, boring pain)

Amitriptyline and Nortriptyline are very similar. But each of us is different and what works for one may not work for another. The side effects you mentioned are ones that I have had with Amitriptyline. Dry mouth, fatigue, foggy thinking and weight gain. I wish I could go off of it as well but my pain returns. And I have had to increase it over time unfortunately. Nothing is as bad as that pain though!

I am going to send you another private message with a list of possible medication used. Most have side effects though. It is a balance of being pain free and being able to balance side effects enough to live a "normal" life.

I have had two MRI's with contrast and without. Nothing showed on mine either. Often times if the neuralgia is being caused by a compression it is too small to be seen on an MRI. The Fiesta MRI is apparently the best one. But honestly with Type 2 there are not usually a lot of options given other than medication.


[/QUOTE]

Hi,i didnt even know what crps was until 2 months ago. I have it in my face,the right side,which includes side of head,but can include all of my jaw,and sometimes one side.My collar bone was also affected.My pain travels.Weirdy,i have had 'back ache' up the top left side,so am not sure if that would be a separate issue.Thats been consistent for 3 weeks or thereabouts. I will look at the link. Thanks. Barbara

I was dx'd with ATN after some dental work that just didn't seem right to me. I didn't have any pain going in, but had plenty of pain coming out, that ended up being permanent. My neuro had me take two MRIs and a MRA. Compressions were never found.

I tried many meds, but they didn't work well and destroyed my stomach. Now, I take a Tricyclic med (tablet form) plus use a specially formulated compounded cream that I rub on my face (right side where the dental work was done). In the cream is Gabapentin, Lidocaine and Capsaicin. This has worked well for a little over a year. Recently, I've had additional breakthrough pain, so we will probably have to increase the dosage or add a fourth medication to the mixture and I see the doc again relatively soon to discuss this.

This med routine has helped me cope physically and psychologically as I feel I have at least a little control of the severe pain.

Right now I have some additional breakthrough pain, so I am considering seeing the acupuncturist for a short while. I saw her for a few months when it first happened and it did help a little.

When you find the right med routine for you, surely you will feel much happier and confident.

I was told that everyone is different but the top combination for ATN is a Tricyclic medication plus Gabapentin, which is also called Neurontin. Others find different meds or combination of meds that work.

It is a difficult diagnosis and seems to require an intelligent and caring doctor plus much due diligence on the patient's part as well.

I tried gabapentin,neurontin,pregabalin and another,all didnt agree with me. I went to docs today as the pain seems to be more frequent,perhaps its good old english weather,it was 27 degrees ,and then suddenly dropped to 19 or 20.I am going to take a herbal combination,doc said it should be ok,so im gonna take 1 st johns wort. I Often put voltarol on my face,and dragon balm,it has that capsaicin in it.I would be interested to know where you get the gabapentin cream from.

I tried many meds, but they didn't work well and destroyed my stomach. Now, I take a Tricyclic med (tablet form) plus use a specially formulated compounded cream that I rub on my face (right side where the dental work was done). In the cream is Gabapentin, Lidocaine and Capsaicin. This has worked well for a little over a year. Recently, I've had additional breakthrough pain, so we will probably have to increase the dosage or add a fourth medication to the mixture and I see the doc again relatively soon to discuss this.

This med routine has helped me cope physically and psychologically as I feel I have at least a little control of the severe pain.

Right now I have some additional breakthrough pain, so I am considering seeing the acupuncturist for a short while. I saw her for a few months when it first happened and it did help a little.

When you find the right med routine for you, surely you will feel much happier and confident.

I was told that everyone is different but the top combination for ATN is a Tricyclic medication plus Gabapentin, which is also called Neurontin. Others find different meds or combination of meds that work.

It is a difficult diagnosis and seems to require an intelligent and caring doctor plus much due diligence on the patient's part as well.[/QUOTE]

The Gabapentin in the cream (along with capcaisin and lidocaine) is a prescription from the doctor that I take to a special pharmacy called a compounding pharmacy. They are getting somewhat common and popular in the US. I do think they are less common in other parts of the world. I had a discussion with another individual from Australia who was in the medical field who had TN. She was familiar with compound medications and compound pharmacies, but could NOT believe that Gabapentin could be compounded into a cream. She and her neurologist had to call all over Australia speaking with various pharmacists, but eventually they were able to make it happen. I don't know how they do it. It involves a base and the actual medicine, but I'm sure it isn't easy.

The really interesting thing for me was that I could not take Gabapentin by mouth, but could rub it as a cream into my face. I was a little nauseas for about three days, but after that, it stopped. When you said it "didn't agree" with you, was it upsetting your stomach? Using it as a cream, reduces the side effects. However, compounding medications into creams is not common everywhere and it can be very expensive.

I too have bigger issues with cold weather and cold winds on my face can make me extremely uncomfortable.

I hope the doctor's appointment went well. Also hope the creams you put on your face helped!!! I use to put capsaicin cream on my face a lot, until I got my prescription cream with capsaicin and the other stuff in it.

Hmmm wonders if i can get it in the UK.May ask the doc about that,i have an appt with pain specialist next month,so may ask. My issues with the pills is i feel like a zombie,all drained out.I drive alot in my job to and from places ,so have to be alert,which tbh im not alert at all times,especially afternoons,but hey ho,i need my job.My doc seems quite fascinated by this,i showed him the MRI,AS well as the dentists response to the MRI ,which conflicted somewhat,so hes quite interested as to what i definatly have.Is it CRPS,or ATN.Wonders if a damaged nerve causes ATN.

The really interesting thing for me was that I could not take Gabapentin by mouth, but could rub it as a cream into my face. I was a little nauseas for about three days, but after that, it stopped. When you said it "didn't agree" with you, was it upsetting your stomach? Using it as a cream, reduces the side effects. However, compounding medications into creams is not common everywhere and it can be very expensive.

I too have bigger issues with cold weather and cold winds on my face can make me extremely uncomfortable.

I hope the doctor's appointment went well. Also hope the creams you put on your face helped!!! I use to put capsaicin cream on my face a lot, until I got my prescription cream with capsaicin and the other stuff in it.[/QUOTE]