Jill Piggott Profile picture
PhD. Prof of philosophy & lit now disabled by daily migraine. EJI volunteer. Director, Reading Justice prison study group. Director, headsUPmigraine.

Aug 14, 2020, 13 tweets

3% of US kids 3-7 have #migraine.

@IASPpain now internationally diagnoses all #pain from chronic disease as pain from chronic disease, EXCEPT pain from #migraine or severe #headache disorders, which it diagnoses as "emotional distress without a known cause."

That hurts kids.

.@winedarkme Did you hear the news? The Inter'l Association for the Study of #Pain (@IASPpain) decided that #migraine pain isn't from the Disease Known As Migraine, but a sign of "emotional distress & disability."

I was happy at 3 when diagnosed. How about you?

Mother (@janpurcell2) Remember when you picked me up at Elem School, and the nurse said if you stopped paying attention, my #migraine would go away & you said "That's the stupidest thing I've ever heard c'mon Jill let's get out of here"?

Say it to THESE GUYS: @IASPpain

Mother (@janpurcell2): You should send @IASPpain a photo of what I looked like when I was 1st diagnosed w/ "disability or emotional distress" not accounted for by a disease with a known pathophysiology.

Of course, back in '64, my pediatrician was still calling it #migraine.

✔️ TO BE CLEAR: #Migraine is the "result of fundamental neurological abnormalities caused by genetic mutations at work in the brain" (NIH).

It's "an anatomically specific pain state" & a "paroxysmal disorder of pan-sensory gain" (Brennan, Pietrobon 2018). ninds.nih.gov/Disorders/All-…

.@WHO uses objective metrics to determine the relative "disability burden" of medical conditions. "Severe #migraine" ranks in the highest class, alongside active psychosis & terminal-stage cancer.

It's the world's #1 cause of working-age disability. @IASPpain

Like my great-grandmother, I'm disabled by hemiplegic #migraine. It mimics stroke: knocks out my right side, my ability to speak &, often, me too.

Per new official diagnostic classification, the pain that accompanies these symptoms has no known cause. @IASPpain

12% of Americans have #migraine, inc'g 18% of women & 10% of kids. There are 4 times as many Americans with chronic, daily migraine as there are Americans with #MS.

Yet migraine is the only common, disabling disease that @SocialSecurity doesn't recognize as a disabling disease.

headsUPmigraine has NO IDEA how a multi-year, intern'l process misdiagnosed #migraine as emotional distress without a known cause, but @IASPpain needs to fix this. Stigma & ignorance add to the burden of a profoundly disabling disease. We don't need "experts" working against us.

3%-5% of young kids (beginning age 3) & 18% of adolescents have #migraine per this paper, so my graph likely underestimates the extent. EACH acute migraine contributes to disease progression. That's why early onset is a key risk factor for daily migraine. …adachejournal.onlinelibrary.wiley.com/doi/abs/10.111…

In kids & adults: risk of progressing to chronic daily #migraine rises exponentially from 4 migraine days/mo to 14 days/mo. (+14 days=chronic migraine), so anyone w/ 4+ days of headache, stomachache, hypersensitivity should see a neurologist about preventive meds.

#Migraine in kids: recurrent #headache &/or stomachache, hypersensitivity to light, smell, sound, taste, motion, touch (Princess & the Pea; "My hair hurts"). EACH day w/ those symptoms contributes to disease progression, so see a dr for help. migraineresearchfoundation.org/about-migraine…

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