Living with Chronic Pain

As for me and my situation it is far from textbook.
I am a 42 year old, physically healthy man, other than this pain issue.
Around February of last year (2005) I saw my primary care physician for ear pain. We went through a battery of treatments such as antibiotics (z-packs; levaquin), steroids (cortisone and prednisone) shots etc.. and finally after about 6 weeks, the pain went away.

This year around the same time the same thing started up, however the pain would traverse back and forth randomly between my ears. We began the same thing all over, except this time after a couple of weeks with poor results, he referred me to an ENT. The ENT could not find any signs of infection from the first exam so she scheduled a CT scan. From the CT scan all she found was a cyst in my left sinus and a lot of blockage. I opted for the sinus surgery as I have always had bad sinus problems and I went in knowing there was no guarantee it would relieve the ear pain.

The surgery went off without any complications, but the random ear pain continued long after my recovery. It seems as though my problem is evolving as my top and bottom molars, my jaws and behind my eyes have added to the random pain I’m experiencing. At times I experience the following in any random order and it can effect the left or right side: Top and bottom molars, back jaw, deep inner ear and behind the eyes.

The best way I can describe it is if I were to come over and stomp real hard on your foot and sometimes stand on it for a few seconds and step off (acute). Then after waiting any random time; seconds, minutes, hour or two and come back while your foot is sore (chronic) and stomp on your foot again and stand on it and then step off. This pain cycles through randomly without any physical rhyme or reason.

Because of the ongoing condition, my doctor ordered another CT scan in hopes of finding a reason, but there were no visible signs. I was referred to an ENT specialist known as a Neuro-otologist at the University Hospital.

The neuro-otologist examined me and found nothing as well so he ordered an MRI and again we found nothing. Diagnosing Glossopharyngeal neuralgia, he referred me to a neurosurgeon. The neurosurgeon tried prescribing Tegretol. We tried it at 200 mg twice daily and I could increase another 200 mg every 3 to 4 days if there was still pain.
Well it didn’t seem to improve matters so now he has me taking Neurontin.

Currently I’m taking 300 mg 3 times daily and I can increase 300 mg after every 3 to 4 days if there is still pain.
As a footnote, I’ve been examined for TMJ, I saw my dentist and had a full panoramic x-ray of my mouth, including individual bite wing x-rays of my molars. I have also revisited the ENT who performed the sinus surgery and strangely there are no signs for this problem. Also, unlike typical neuralgias, I can not induce the pain I experience. I even tried hot and cold fluids and foods and nothing seems to trigger it except whatever is causing the problem.

In short over the past 3 months I’ve been having to manage my pain with Lortab 7.5’s as needed. Some days I get by with 2 to 3 a day, sometime as little as 1 or none. There was one day it took 5 within a 5 hour period to bring relief. I get to where there are days I’d rather go through the pain than feel drugged out and so I just cope with it. Then there are days when I get to my coping threshold and take the pain medication.

I’ve searched high and low on the net to find anything that resembles my situation and have yet to find anything. With this said, I am open to anyone’s advise on diagnosis, doctors, forums or websites that you feel may help my challenging situation.
Thanks in advance and God bless you!
Shelby