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.
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Originally Posted by bradrich11
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?
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