By Mia Maysack, PNN Columnist

Last week I was fortunate to attend the 14th annual “Headache on the Hill,” a lobbying event held by the Alliance for Headache Disorders Advocacy (AHDA).  We had the largest turnout ever in participants and number of meetings, although it was a far different affair than previous ones.  

Due to the pandemic and Covid precautions, visits to congressional offices that normally would've taken place in person on Capitol Hill were conducted online via Zoom -- which was an adjustment I was grateful to make.

As a result of doing things virtually, it gave people who ordinarily may not be well enough to attend an opportunity to do so. I feel this is a more inclusive approach and should perhaps remain an option even after this pandemic settles. 

Traveling is extraordinarily strenuous on my health and always requires an extensive amount of recovery time. So the opportunity to lie down in between meetings and have the comforts of home around me -- such as soft lighting and blackout curtains -- made all the difference and helped make getting through the day possible. It also ensures I won't be confronted by weeks on end of flare ups and pain cycles. 

I am proud to represent the state of Wisconsin as a volunteer patient advocate, human rights activist and someone who has lived with intractable head pain to some extent each and every day for almost 21 years as a direct result of a traumatic brain injury.  

Given that there are around 40 million people in the U.S. alone who live with migraine disease, the odds are that you either experience it yourself or know of someone who does.  For those who are privileged not to have migraine, Covid-19 has given you a small taste of how we often exist:  shut in and unable to see loved ones, go to work or do things we enjoy. 

I live with both migraine disease and cluster headaches, which are called “suicide headaches” for good reason.  There's no limit to the chaos, interruption, inconvenience and discomfort these conditions have caused in my life, requiring my full time attention just to manage the symptoms.

The difficult experiences I and countless others have faced in seeking, finding and attempting different forms of treatment is why I continue to advocate -- even when I don't feel up to it. Migraine and other forms of head pain are at the top of the list regarding burden and disability, yet we've been severely limited with treatment options that usually mask the symptoms temporarily, as opposed to addressing the root cause.   

We've seen progress in recent years with more injectable treatment options, after being limited for decades to oral triptans. But insurance for the shots can be a nightmare (if you're fortunate enough to have insurance) and I received what was labeled as a "bad batch" of shots that gave me side effects I am still living with today.   

What We Asked For

Our medical system is set up in such a way that we’re able to receive a prescription relatively easily, but alternative tools such as water therapy, massage, oxygen and mindfulness meditation aren't seriously considered, let alone covered. This is a very real problem.

It also makes no sense that migraine conditions are some of the least funded research areas for the National Institutes of Health. Our “asks” during Headache on the Hill were to devote more funding toward the research and treatment of migraine. Currently there's only $20 million or so being spent. We’re requesting $50 Million designated specifically for NIH research on migraine and headache disorders.  

Additional funding could also help incentivize more providers to obtain neurology-related medical degrees, as there is a severe shortage and need for more headache specialists. More funding is needed to develop new treatments, help cultivate data on the benefits of more holistic approaches, and assist in providing more dignity to those of us who feel invisible and shunned by a system that's supposed to be on our side.  

Furthermore, and perhaps even more disgracefully, hundreds of thousands of our military veterans suffer from traumatic brain injuries as a result of being exposed to explosions and toxic open burn pits.  We asked for another $25 million to double the number of specialized treatment sites that the VA has for veterans with headache disorders. 

These are the individuals who ensure that we possess and maintain the liberties of this country and they deserve the absolute best we have to offer. I know that we can do better on all of these issues and we must. It's time to urge our representatives to follow through and do the right thing.  

You can help by visiting the AHDA website and following the prompts for sending an email to your representatives and senators.  Urge them to fully fund the VA’s Headache Disorders Centers. 

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.