Chronic Migraine Awareness

Chronic Migraine Awareness, Inc. is pleased to present

The Struggle of Understanding My Migraine Disease

Written By: Alexes Elizabeth

It was too hot, maybe? Did I just faint on the schoolyard playground? After many hours of traveling out-of-state, it was at a park that I wondered, how much time has passed since this unexplainable occurrence? Over the years wondering, am I hypoglycemic, is this a panic attack, is this depression or anxiety, could it maybe be ataxia? All or none? Some of these questions that started over thirty years ago and I have yet to understand, navigate or find verbiage to connect the linear line, maybe this is a very temporary impasse…

Every millisecond of my life is now filled with migraine disease (the enemy that has nestled and seems so very comfortable in my life). My vessel (body) could qualify as a meteorologist without any fancy equipment. The barometric pressure changes are my nemesis. Overall body weakness, chills, tingly numbness, indescribable pain, loss of vision, temporary paralysis mimicking stroke/seizure/Todd’s Paralysis,slurred speech, sensory overload, brain running on short circuits and the trust has been broken between my brain waves connectivity to my limbs. This is my chronic intractable status migrainosus, this is my hemiplegic migraine, this is my basilar migraine (migraine w/brain stem aura).

People look forward to spotting an eclipse and sharing photographs, but the type of eclipse I experience when one migraine symptom seems to just barely escape me and a new migraine type begins its orbit and they, to me, seem to eclipse within me. Without any training I have become my own self-proclaimed expert of myself. My medical providers rely on me to describe my chronic migraine disease with precision. Sometimes, I cannot vocalize what I am feeling or where the pain is, when the pain and migraine started, and any of the other necessary details. I no longer have the privilege to say, “I do not know,” or “I am not sure,” because these phrases cost dearly and delay the key clinical care I need. I rely on the migraine community for education to understand new medications and treatments. I have to have a plan with a list of questions and concerns thoughtfully spelled out, because sometimes I wait between three to six months for an appointment with my neurologist headache specialist.

It no longer matters which migraine is being served up, I no longer care to describe it. I have to mentally normalize my greatest pain levels. Understanding my multiple morbidities and how they play a role in the potential exacerbation of migraine disease, this is what I am unofficially tasked with. Meanwhile without peripheral vision and an unreliable mainframe (brain), I am to recall, recount, understand and explain and it all becomes inevitably exhaustive and often carries a description of stress.

There is no new normal, yet, awaiting to plan healthy goals and try to keep busy, as I am sure we all are as we shelter-in-place. Where does one travel to from the greatest impasse? How do I find normalcy? What type of goals are healthy and where do I see my life, living situation and any prospects from inside my eclipse? How do I love myself through all of this while icing my cake of burden with being extremely difficult, and not feeling worthy of the love/support/shelter being provided to me?