What was our mission?

Addressing and ending the headache doctor shortage. The US has less than 1/6 the number of headache doctors it needs. By passing bill H.R.3414 and S.2892 and amending language to “approved headache fellowships,” instead of “residencies.”

With so few specialists, suffering patients must wait weeks and months for an appointment… in that untreated time, attacks can become chronic, symptoms worsen, and patients receive improper treatment. Alliance for Headache Disorders Advocacy #AHDA is asking for support of this bill – the Opioid Workforce Act – which is bipartisan. Because no one wants opioids around, right? Well… not quite. But while opioids are an amazing tool for pain, they aren’t at all the first choice for effective treatment of migraine.

150+ migraine and headache disorder advocates and medical professionals, representing 45 states.
Have I ever mentioned how much I love Washington DC? In my life before, I was a political junkie and would have loved serving the people of America.
Team Texas: Casey Davis (Livingston), Ashley Razook (Austin), Donna Kobayashi, RN (Austin), Kelley Thiede (Arlington), Katie Pearson Mahaffey (Euless) and Gunner the Service Dog, Duren Michael Ready, MD (Temple). Dr. Ready is the program director of the Central Texas Headache Fellowship at Baylor Scott & White in Temple, Texas. Photo of our group enjoying a Dr Pepper in Sen Ted Cruz’s office before meeting the Senator.

This was my first year advocating at Headache on the Hill. I knew it would be amazing, but also push me to the very edges of my limits handling stress and stimuli. Dr. Ready was a HOH pro; he knew exactly where everything was and was amazing at explaining the legislation to staffers and representatives.

The day before in training (Monday) when I asked us all to tell our stories and get to know one another, someone asked him why he chose to go into headache medicine. To which he replied: “Among many other specialties, I found I can help headache patients get better.” (cue emotion: Donna immediately tears up at this)

We really were a good team at Headache on the Hill, if I do say so myself. I have indescribable admiration for these four absolutely amazing women who live with migraine disorder. Each of them have a story of horrible pain and symptoms, loss, and grief, but also a powerful determination to find the medical treatment they deserve to help them live their best life, with this disabling illness.

I was the last one to share my story at our impromptu round table at training day. After hearing each woman describe her journey and how it devastated her life, when it was my turn to share, I couldn’t stop the tears. Overcome, I felt quite ridiculous weeping and trying to get the words out of the story I’ve lived. Typical Donna and not my finest hour (and tears would not be helpful on Capitol Hill during our meetings with staffers and reps). Dr. Ready even remarked that Chronic Migraine patients have a disheveled and overstimulated nervous system; tears and sobbing do NOT help our condition. How many times have I mentioned that when I found myself progressing from episodic to chronic, I was noticing my nervous system seemed to be on rails all the time?

While I was embarrassed about my sob-fest, one thing Chronic Migraineurs often show an abundance of is EMPATHY; my fellow Texans were just … SO kind and understanding. And I assured them I would keep composure the following day. *Donna blows nose*

Back to our first Capitol Hill visit with Senator Ted Cruz and his staffers… Dr. Ready explained the process of becoming a headache specialist (med school, residency, and finally pain specialty or headache disorder fellowships), the specifics of S.2892 and ammendment of language. He then would turn to Casey, Katie, Kelly, Ashley and me and say, “These brave women – all struggling with migraine disorder – have traveled all the way from Texas to DC to tell their stories.” The staffer would look to us and one of us would start speaking, then another would join in. It was as if we’d known each other forever… we could build on stories, explain how they pertained to our ASK today, our personal frustrations and dead-ends with present medical care, the impact of migraine disease on our lives, careers, family. No one dominated the conversation… we simply talked. I tried to find out what the staffer’s personal experience with migraine was – so we could establish a frame of reference. And I also pointed out that we are TEXAS and should be the BEST at everything.

At one meeting, Dr. Ready caught me off-guard when he explained (a fact I already knew) that migraine disorder was particularly devastating since it almost always strikes ~ ages 18-55 (mostly women), when people are in the very prime of their life: working their careers, raising their families, living.

This statement struck my heart and my last 12 years of Chronic Migraine flooded my mind: my children only remembering me sick, no longer being able to practice as a nurse, the financial collapse my migraines have caused our family. (A deep breath in, hand to my heart, and just a few tears…)

Senator Ted Cruz
Senator John Cornyn (staffer)
Congressman Roger Williams (staffer)
Congressman Kenny Merchant (met with staffer)

We walked over 10,000 steps through hallowed halls of hard tile, rainy wet streets of DC, in and out of security and different buildings (Rayburn, Longworth, Russel), up and down stairs and tiny old elevators. We had five meetings with legislators and staff and talked and talked and talked some more.

And where was my Migraine during this very busy day? A low level (thanks to adrenaline)… but complete with nausea and vertigo and bad photo sensitivity. Headache on the Hill is quite an assault on the senses: loud, echoey, hundreds of people, unfamiliar environment, varying temperatures, physically and emotionally demanding … and, yes, definitely, wonderfully rewarding. I feel bonded to new friends from Texas and the rest of the country, and I would love to return next year for the 14th annual Headache on the Hill. We will follow with the contacts we made and the ASK bill in the great hopes of improving treatment for the thousands of people living with migraine and headache disorders.

How can you help?

1) Contact your senator to urge support of S.2892 and ammendment language from residency to fellowships.

2) Contact your representative to urge support of H.R.3414 and ammendment language from residency to fellowships.

3) Consider a donation to help support AHDA and our annual Headache on the Hill event. No amount is too small. Donate link: http://bit.ly/2w4YpCZ

4) Consider attending Headache on the Hill in the future!

My friends and Migraine mates for life:

Katie Mahaffey is a brilliant young woman who has struggled with Chronic Migraine since she was a teen. She also has POTS and Ehlers-Danlos. She’s trained Gunner to assist her as she struggles with syncope episodes several times a week. Many Texas doctors have rejected her as a patient and she now travels to Chicago for medical care.
Kelley Thiede is an amazing woman. Her migraine journey began with a growth on her optic nerve and commenced after an ENT procedure. It has taken her 10 years to find a doctor who’s been truly able to help her establish some control over migraine, continue her career and have meaningful time spent with her daughter.
Casey Davis is an incredible woman who lives outside of Houston. Her migraine journey has devastated her life, but she still pushes through and is able to work while enjoying time with her husband.
Ashley Razook is a fellow Austinite! We both are patients of Austin Neurocare and Sara Westgate MD and Mariah Denney PA. Ashley’s migraine journey started quite suddenly as she woke one day with a terrible headache that has never gone away. She has sought treatment all over the country. Well-spoken, bright and articulate, she is quite impressive and continues to work from home.
Ashley, Katie and Gunner prepare before our next meeting.
Lunch panel discussion hosted by The Headache & Migraine Policy Forum

Our day started at 07:45 and we finally returned to our hotel at about 18:00 hours. I was so exhausted and flaring that I could only call for room service dinner of chicken panini and hot chocolate, get ice for my head, take medicine and go to sleep!

The following day, Wednesday, I said my heartfelt goodbyes and traveled back home to Austin, my babies, and my loving husband. Thursday I wasn’t able to get out of bed for migraine and RA insane pain. Recovery will happen! But it may not happen quickly. This is the life of Chronic Migraine. I am so grateful to have been a part of this amazing experience of Headache on the Hill 2020… to have met with our country’s legislators, worked with medical professionals intent on advocating for their headache and migraine patients, and communed with so many inspirational migraine patient advocates! I never saw this MIGRAINE life coming, never anticipated the way it would mangle my dreams and shrink my life. But I’ve learned there are thousands like me; I am not alone. And there is HOPE.

#ChronicMigraine #MigraineAwareness #CMA #ARMS #invisibleillness #MigraineAdvocate

One thought on “The Burden of Migraine #HOH2020

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