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Headache Migrainosis (Berkeley, CA)
by: Janet

I have had lifelong migraines, chronic for the past 15 years, usually at a high intensity (8-10/10 on pain scale) that are no longer relieved by NSAIDs, triptans or even high dose opioids (hydromorphone). I have tried quite many meds prophylactically with no discernably effect (beta blockers, calcium channel blockers, sodium ion channel blockers, antidepressants, botox) and periodic rhizotomies of c2-4 facets. For the past 4 months I have been in status migrainosis (continuous headache at 9-10/10 severity, nausea, vomiting, photophobia, phonophbia, osmophobia). My doctor's approach is one of hospice care - medication refills and periodic rhizotomies with a stong disinclination to refer me to other physicians.

I was feeling pretty hopeless - staying in bed all the time with my intractable pain, then I gradually realized that my vision was blurry and I needed to wear 2 pairs of dark glasses while indoors due to photophobia. I couldn't tolerate the sun, was dizzy and hypotensive. I finally insisted on a referral to an ophthalmologist who confirmed some visual loss in the left eye, left lateral field neglect and inflammation in the anterior chamber. He diagnosed "severe uveitis", put me on ophthalmic prednisolone and oral prednisone. I had lost about 20 lbs.

I also saw a Rheumatologist and a Neurologist - both of whom were rather uninterested in my medical history, clinical presentation or (abnormal) labwork - which showed dehydration, hyponatremia, hyperkalemia, hyperglycemia and neutrophilia. [Which I am working on nutritionally]

While the steroids have helped, I did not recieve the dramatic and immediate relief I had gotten in the past in terms of pain and fatigue relief.

I now await a referral to the UCSF Headache Clinic. How can I demonstrate to my healthcare professionals that this is an urgent situation? I expect a 6-8 week wait (or more) for an appointment. Any help you can provide would be appreciated.

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