Chronic Migraine Awareness

Written By Victoria White

Presented by Chronic Migraine Awareness Inc.

It is beyond surreal entering a hospital in an almost empty center city Philadelphia right now. I cannot help but feel anxious about the possibility of accidentally spreading COVID-19 to another patient or to a healthcare professional if I’m an unwitting carrier and also some measure of fear of contracting the virus myself as someone who only just got my own respiratory issue under control again. I’ve already accidentally touched my face twice. But I also feel deep gratitude toward all the healthcare providers and staff continuing to care for migraine patients despite the risks. We chronic migraine patients can so quickly spiral downward into suicidal ideation from the never-ending pain or end up in an emergency room from the severity of our symptoms. 

I don’t have COVID-19, but I’m here indirectly from the disruption it has caused everywhere. I do need to receive outpatient infusion treatments or inpatient hospitalizations for severe chronic migraine from time to time, but the new Aimovig medication reduced the number of these from up to 9 times in a single year to now usually only once per year in July when the summer barometric pressure changes wreak havoc on my nervous system. However, lack of quick access to treatment and medication for an asthma flare (and temporary rationing of asthma meds) forced me to rely heavily upon my albuterol rescue inhaler. And overuse of my rescue inhaler and delays in taking my prednisone (which I was told to use caution with because it compromises the immune system) probably exacerbated my neurological disease. So here I am at Jefferson Headache Center for a three-day outpatient treatment in the middle of a pandemic.

I have nothing but respect for how Jefferson hospital is handling everything. Before I could be admitted, I had to answer an online questionnaire about current symptoms, whether I had travelled outside the country, and whether I had contact with anyone with confirmed COVID-19. I also had to verify my answers via phone with a nurse both one week prior and again 24 hours prior. Then two gowned, masked healthcare providers asked me the same questions in the lobby, gave me a mask to wear, and had me sanitize my hands. Next, I had to answer the same questions once more upstairs in the neuroscience unit. And when the nurse took me back, she asked—the 6th time—about any COVID symptoms and let me know some patients are afraid to tell them and break down by the time they get to her and that they are only asking so that everyone receives proper treatment. Then I was checked into the infusion lab, and I’ll have to wear a mask for the several hours that I receive treatment each day.

I cannot help but feel overwhelming sadness and admiration for the dedicated healthcare providers who are facing this anxiety on the daily and the very real possibility they could contract the virus themselves or spread it to their loved ones. I feel acutely aware of the many, many people dying all over the world from this virus while isolated and distant from loved ones who desperately want to be close. I feel appalled for the essential workers forced to work in unsafe conditions. I feel awful for the COVID patients who are currently recovering in a field hospital in Temple’s Liacouras Center here in Philadelphia while Hahnemann hospital sits empty because the developer was too greedy to rent it to the city for a reasonable sum.  I also cannot help but feel angry for all those who have lost their jobs or received reduced hours or pay or both and who may have simultaneously lost their health insurance in the middle of a pandemic. And I cannot help but feel furious at all those taking advantage of uncertain times to further the ugliness of racism and xenophobia.

I have done what small things I could to contribute to the mutual aid group in my own community, but as I sit here struggling to breathe through this mask and wishing that the sunshine I crave wouldn’t cause me such razor sharp pain, I wish I could do more. Recently, a friend of mine gave her yoga class the sage advice to take the time to learn from the in-between place, to not struggle too quickly to get back to the “normal.” I think that is valuable advice not just for the larger picture of the pandemic or for a person living with migraine disease managing chronic illness but also for the everyday aspect of our lives when we experience disruption.

We lose something vital when we try to rush forward into tomorrow rather than taking time to honor the present, no matter how difficult and trying that moment is. Tomorrow is not promised, and we can all but do our best in the moments we are given.

*CMA would like to invite you to contribute your story to our blog* Contact Kristen at rkbs4e@gmail.com