Still a mystery

In June 2008 I awoke with the worst headache of my life, at age 53. This triggered a visit to ER, multiple MRIs to rule out AVMs or whatever. Ultimately after consultations with a neurologist and neurosurgeon the conclusion in September of 2008 was that I had an episode of encephalitis.

No other headaches until October of 2009 when they became more frequent and intense. Was on medical leave for all of spring 2010 while further evaluations were done and awaited an evaluation at UCSF. The neurologist there said I had status migrainous referred me to the UCSF Headache Center and the UCSF Osher Center for Integrative Medicine. Both appts took months to get while my primary and I just pursued pain management.

Finally in August 2010 Dr. Goadsby at the UCSF Headache Center diagnosed me with chronic migraine and I began various preventatives. His opinion is that the sudden onset is due to menopause and I will be better when I am done. Lots of missed work as the lights and noise at school are the worst. My life is unpredictable as there does not seem to be pattern or triggers. I recently just went through two miserable weeks and finally went to prompt care where I was given delauden to break the cycle. It didn’t, and I traded temporary relief for 5 hours of vomiting.

My MDs now want me to try nortriptyline again. If this does not help I will be considered for a study using Botox. I am very very fortunate to be on temporary disability right now and am on a mission to get well. I exercise and practice yoga 5-6 times a week, have a healthy diet and very careful about sleep. Am considering butterbur and researching it right now. Am also interested in acupuncture.

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