I am very new to TN and not even certain that I have this condition. My ENT after recently having a CT scan, tonsillectomy and two small tongue biopsies(rule out cancer) has diagnosed me with neuralgia. These are my symptoms, please tell me if anyone can relate.
6 months constant earache-feels like swimmers ear
Tongue pain, burning, sore to stick out
Jaw pain, lower molar pain, parotid pain
My pains aren't electric at all and I know what nerve pain feels like. They are just constant and will not go away. I do get relief while sleeping, but I immediately wake up with the earache and then the rest of pain starts. Nothing triggers this pain. By the end of the day my tongue is burning, my throat hurts and I don't even want to talk to anyone. I feel my throat is swelled often also.
The doctor has put me on Neurotin which has taken the edge off somewhat, but the minute it wears off the pain is back. I'm so scared that I have some type of throat or tongue cancer. I will have a MRI next week to check further.
I just really curious is this is anyone else symptoms. Most of my symptoms are on the right side, but the bottom molar, jaw and ear has also started somewhat hurting on the left. I have seen oral surgeons, dentist, endodontists and my teeth and gums are fine. I am at wits end, because my pain really isn't electric or stabbing.
So sorry you are feeling all this pain. It must be really frustrating to have this number of pain locations on your face. One thing my Neurologist warned me against was thinking that all the pains have one common source. It is really easy to do so. Of course it does not sound like the traditional TN type 1 pain but sounds a little more like abnormal TN type 2. I wonder if you have gone through the traditional aspirin, Tylenol and Advil regimes just to see if these would help ANY part of your pain. I think dividing the pain in categories and then tracking them on a daily basis with what traditional and alternative treatments you can find. You and your doctors are going to have to be very creative. I would start thinking of myself as a scientist and researcher to try to keep despair at bay. Also start the diary with when the symptoms first appeared and move forward through your life. Try heat and cold to see if any help. Also what works one day may not work the next. Try to calm yourself with mediation and keep stress at a minimum. I am sending my best thoughts to you! Keep in touch and DON'T PANIC!! Tina
Same thing happened to me, I felt the pain first in my tounge then jaws lips and ear, I wasn't able to speak or eat I saw five different doctor my first thought was cancer or a tumor.