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Migraine in bed

PJ’s Story of Perseverance

I had headache incidents as early as the age of 10. I would get a horrible headache, nausea, diarrhea, faint, and at some point, if I could not get the headache and diarrhea under control, my potassium level would drop dangerously low.

At the age of 25, I developed spinal meningitis and was left with shingles at the base of my spine.  Shingles flare up when I am in a horrible headache episode lasting for weeks.

At the age of 27, I was diagnosed with Intracerebral Hemorrhage and was not expected to live. Thank God, I recovered and exceeded my doctor’s expectations. Since being in a coma, I have had a runny nose when I stand up, plus I always experience pressure headaches.  When a headache occurs due to weather, my pain level goes to 10 or above on the pain scale.

In 2010, I had a hemorrhage on the opposite side and the outside layer of my brain. I am now 58, and for the past 4 years, my headaches have been unbearable. I have tried every treatment available. I discovered that I am allergic to countless medications. They conducted a DNA test and discovered that I have Moyamoya Disease & Ehler’s Danlos Syndrome markers.

I am not overweight, no diabetes, no heart issues….but I have the worst headaches on the planet! After decades, I have eliminated everything that triggers my headaches. The weather is something I have no control over and it wreaks havoc on my head. When I travel by car and the altitude changes, my headache returns.

I am not one to lay in bed, but for the past 4 years, my headaches have controlled my life. I have such specific symptoms that there has to be a neurologist out there that would have some ideas.

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