looking for answers on migraines
I'm looking for any additional advice on diagnosing intractable migraines. Mine started at 18 and have gone on through the years to increase in severity. Over the last ten, i've had multiple CT scans, MRIs, dye studies, bloodwork, psych evals, allergy tests and others to try and find the underlying cause. My Dr. has tried all the new and older migraine medications, cardiac drugs and antidepressants that had been shown to decrease migraines in low doses. Injectable, non narcotic meds including ketoralac, botox related drugs and others that I can't remember the name of off the top of my head. I've tried chiropractors, accupuncture, accupressure, biofeedback, and exercise. Made dietary changes to delete as many migraine triggers as I could identify. My Dr., a pain specialist and boarded anesthesiologist has refered me to several nuerologists and I have a peripheral nerve stimulator with leads around the effected eye.
When nothing helped, (he still looks), he resorted to narcotics, which he says is usually not recommended for migraine treatment. Due to tolerance built over time to the medications, the doses have been increased several times. There is a vascular test of some sort that can be done, but because of the peripheral nerve stimulator, nothing magnetic can be used anymore. (No more MRIs either for the same reason). It took several surgeries to get the leads in the right position, and taking it out for another test is out of the question.
I used to have to lay flat when I had breakthrough pain, (the migraines are there all the time at a 7 out of 10 pain score while breakthroughs are off the chart). For the last ten years, I've only been able to sleep in a semi-reclined position, even if I sleep on my side, which has resulted in anatomical changes in my back. (More chronic pain), and the rescue injections have left me with the inability to bend my legs more than a 120 degree angle due to scar tissue in the muscle.
Has anyone else found themselves where I am and had success with any other diagnostics? I'm only 49 and worry that I will lose all of my mobility in a few years. When not at work, (two to three half days a week, lately only two), I'm confined by the pain to dark rooms and am rarely able to get out. My Dr. is one in a million, even driving a medication script into the pharmacy for me once. He has consulted headache clinics, nuerologists and anything he can find, but so far, we have already tried it.