This was first diagnoised as TMJ (Temporomandibular joint disorder), in fact, I believed for several years this was the problem, and was treated and medicated for it, the medication worked because of it's capability to treat neuropathic pain (Gabapentin (brand name Neurontin) is a pharmaceutical drug, specifically a GABA analogue. It was originally developed for the treatment of epilepsy, and currently, gabapentin is widely used to relieve pain, especially neuropathic pain, as well as major depressive disorder.)
I have had 3 root canals on just one tooth, I have had 2 teeth removed completely, because initially, the pain only ran along my sinuses which led to a phantom pain in the teeth and along the left side of my jaw, from the joint down. It does not help that I also have chronic sinus disease, which was never diagnosed from 2004 until an MRI in 2009.
In 2007, I went to a maxillofacial surgeon who specialized in TMJ, he made me $3,000.00 splint, which generously included the cost of up to 7 visits for readjustments, which were used in less than 3 weeks. I found, initially, with medication, that it was working, I was so happy to be pain-free! After a couple of months, the appliance adjustment, which I wore 24/7, was hurting before I got home, I mean, extreme pain and the only way to relieve the pain was to remove the splint. I stopped using it completely. The Surgeon blamed my medication, stating that he find patients who take medication do not respond well. I say bull crap!
As years went by, the pain increased, but also spread, it began going toward my ears more, my scalp, and under my jaw, all I could do was take my medicine, 300 mgs in the morning, 300 more in the afternoon, 300 more around dinner and 600 before bed, and if I were lucky, and usually I wasn't, I wouldn't wake up in the night in pain, however, when I did, I'd have to take 1200 mgs more, sit with an ice pack or two, put my sunglasses on (any light whatsoever stings and burns my eyes during these "episodes").
and try to comfort myself any way possible.
To date, I get this facial pain for about 6 months, which is 3 months longer than what it was in 2004. The pain is intensified with many new "pain sensations" and the duration of each episode is much longer and is not easily controlled with medication and an ice pack. I have had an ice pack on my face, while pumped full of medication for 11 hours straight before.
I can't count the times that I have said, and meant it, if I had a gun, I'd end this pain right now..The height of the attack is so much pain, I can't describe it, but I'll try, it is only the left side of my face, and the area affected is my left scalp, down to my neck, from my left ear to the corner of my nose, my jaw line, teeth and eye(left eye), there will be simultaneous, crushing, burning, surface throbbing, deep throbbing, stabbing sharp pain, with what feels like bolts of electricity shooting upward into the face, my teeth on the left will all feel like they are made of cement, my eye swells and throbs and waters so much, my right eye will water, I will be unable to stand the sight of light..I will wear sunglasses in the dark. It's HORRIBLE, I sit with an ice pack attached to my face for hours on end, and I rock back and forth, gently, with my eyes closed in an attempt to "ride the wave of pain", it is sometimes less stressful to embrace it. This pain is excruciatingly painful.
Finally, I found a doctor who loves her job and takes it seriously, she doesn't look at me so much as a paycheck, but as someone who is responsible for and truly wants to help. When I began seeing her, I gave her copies of all my medical records with regard to "TMJ", as she read each one, she looked at me and pointed to one MRI result which clearly stated that no dysfunction of the Temporomandibular joint was found. She then ordered a lot of blood work, got out a pad and paper, and asked me to describe the pain, when it started, where I get it, how long it lasts in episode duration and does it come and go? I answered all of her questions, went to the lab and had the blood work done, and was back to see her a few days later. My blood work showed that my B12 was very low, I underwent 6 shots to bring it up (B12 is essential for the nerves) and I believe those shots helped with my pain, but she also did some investigating on my symptoms and the amount of medication it takes to get the pain under control and that is when she diagnosed me with having Trigemnial neuralgia. My husband and I left her office with the information sheets she had provided, as I read all of the symptoms, I could NOT believe it described mine perfectly, there is only one thing I found that did not match my circumstances, I am woken in the night with pain, whereas most are not. In fact, it seems the minute I try to lay down, even slightly elevated, it causes the attack. I have tried sleeping propped up with pillows, and have successfully done so when full of medication and a recent prior attack (say I had an attack at 7:00 p.m. and attempted the propped pillow sleep at 10:00, I'd likely be successful until about 2:00 am). This could be a result of also having chronic sinus disease which really flares up during these pain episodes (6 months worth). I have medication for that too, which helps a great deal.
I have 4 months left of my remission time and it's sad because I really can't even fully enjoy it, I'm so anxious and stressed about what I know lies ahead.
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