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My Story…

My earliest memory is of a headache.  I was three, and it ruined my trip to the zoo.  Although I was not formally diagnosed with migraine disorder until my 20’s, I believe I have had migraine since childhood.  I simply thought my symptoms were what other people meant when they said had a “headache.”  I couldn’t have been more wrong!

My official diagnosis is status migrainosus with aura and intractable migraine.  I am one of those 1% of those diagnosed with migraine for whom attacks last 72 hours+.  My longest attack without any decrease in pain levels was 44 days.  Unfortunately, intractable migraine is often also resistant to treatment.  

A few things I would love people to understand about my experience with migraine disease and intractable migraine:

1. I ALWAYS have migraine; it’s a disease, not an event.  Because migraine, for me, is a chronic condition, it’s always there; the intensity just varies.  My “normal” is a pain level of about a 3 or 4.  I don’t even track the days that my migraine symptoms are at this baseline.  Those are the good days.  

2. I had 275 days functionally impacted by migraine last year.  Remember, I don’t even bother to count the days where pain levels are 3-4 or lower.

3. Migraine is not just head pain.  For me, migraine also includes black spots in my vision, clear floaters, blurred vision, nausea, dizziness, balance issues, aphasia, slower processing speed, word retrieval issues, and difficulty with fine motor skills.  

4. A patient can do everything “right” and still suffer.

I have a great support system online, a FB group called Chronic Migraine Warriors.  Our team, Migraine Crushers, is participating (in person and virtually) in the Philadelphia Miles for Migraine event September 29.  

I participated in person last year as well, and it was hands down one of the highlights of my year to meet my fellow migraine warriors in person.  💜 

Please consider a show of support for your favorite migraine warrior (yours truly) by supporting our Miles for Migraine team.  Funds raised will go to migraine research & the Jefferson Headache Center.

With love,

Dana 

Recent donors

Donation date Donor name Donation amount
Sep 21 Anonymous $189.48
Sep 08 Valerie Terry $27.48
Mar 27 Facebook Fundraiser FB Fundraiser donations through 3/21 - 307114318673394:Dana's 50th Birthday Fundraiser for Miles for Migraine $267.92
Jan 07 Anonymous $27.48