For the past three years, I have had one long-term migraine hit in the late summer/early fall that has lasted from 21 days (3 yrs ago), 69 days (2 yrs ago) and more than 90 days (currently). For various medical reasons, I am unable to take triptans, ergots, DHE, antiemtics, and narcotics. Depakote, IV magnesium, IV caffeine and IV steriods have been tried with no success. I have been on Trileptal for the past three years and am currently switching to Keppra. The migraines are always on the left side of my head in the eye, temple, and back of head. Nerve blocks in the back of the head are beneficial for that area but do nothing for the eye and temple pain. My concerns are as follows:
1. I was diagnosed with RA and Sjogren's Syndrome two years ago, though symptoms were apparent long before diagnosis. Medications to treat both include oral prednisone, MTX, and various biologics. All but prednisone was stopped to see if the other RA meds were causing this current migraine, but there has been no change in headache symptoms.
2. This migraine has lasted much longer with much worse symptoms: hemiplegia x3 (resolving each time in about 12 - 24 hours), ongoing double vision and blurry vision, pain in eye when looking up and sideways, and intense periods of confusion,
3. I have been complaining to the neurologist and PCP about difficulty with memory and word recall for the past couple of years, but have basically been ignored. My rheumatologist said that this may be due to RA fatigue.
4. I have had ongoing problems with numbness and tingling in all extremities, as well as my left leg dragging throughout the year. Again, the rheumatologist thinks that it may be RA related.
5. My last CT showed "mild small vessel white matter disease" when I do not have hypertension, diabetes, or high lipids.
6. My recent LP demonstrated a slightly higher than normal pressure, but not nearly high enough to be considered for pseudo tumor cerebri.
I am interested in your thoughts when looking at all of these symptoms together. Am I truly having one very long migraine, or is there possibly something else going on? If it is a migraine, how can it be broken when I am so limited as to the medications that I can take? If it is not a migraine, what avenues should I pursue to get this treated so that I can go on with my life?
Thank you for your thoughts and suggestions.
TR