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Migraine: The Most Consistent Thing in My Life

Medically Reviewed By Lisa Valente, MS, RD
Jaime Sanders_Migraine The Most Consistent Thing In My Life

I wake up every morning, and I first feel pain. Each day is another 24 hours of daily migraine attacks, and trying to figure out how to survive them. The one consistent thing in my life is migraine. This neurological disease has grown with me in a way that feels cruel and oddly comforting. I do not know myself without migraine, so the thought of who I could be as someone who has never had the disease seems foreign and unrealistic. 

Before I became pregnant with my youngest son, I had episodic migraine, which I could manage with over-the-counter medication. During my first trimester, the nature of my migraine changed utterly. Every day for those first 90 days, I had a migraine attack that did not go away. Until then, I was unaware that migraine could be severe and continuous. My life and migraine have not been the same since then.

What is intractable migraine?

Migraine is a disabling and complex neurological disorder. I have experienced symptoms from nausea and vomiting to sensitivities to light, sound, and smell to difficulty speaking, brain fog, and tinnitus. For the average person, migraine attacks typically last between 24 and 72 hours. An attack lasting longer than 72 hours is called status migrainosus or intractable migraine.

In 2008, I received a diagnosis of status migrainosus and have been managing daily migraine ever since. Status migrainosus affects less than 1% of the 40 million people in the United States living with migraine. For 15 years, I have had minimal breaks from the pain and other disabling symptoms associated with migraine. The number of treatments I have tried and eventually failed is too many.

A tale of two beasts

One of the more challenging aspects of living with intractable migraine is how much it impacts my mental health. Major depressive disorder and generalized anxiety disorder are two mental health disorders significantly intertwined with migraine. The longer I have a migraine that does not respond to treatment, the harder it is to manage depression and anxiety. I know personally how migraine isolates those affected by the disease, keeping us in the dark, in the literal and metaphorical sense of the word. Constantly feeling defeated, exhausted, frustrated, angry, sad, and overwhelmed by grief feeds into the negative narrative that depression and anxiety force upon me. It is hard to escape sometimes and creates a perpetual sensation of brokenness.

My migraine disease, depression, and anxiety all feed into each other. The longer I am in pain, the more depressed and anxious I feel. Whenever I am feeling overwhelmed by feelings of sadness and grief, my pain increases. There doesn’t seem to be any in-between. My body and mind feel so shattered that the hope of ever feeling whole again has been challenged.

Going through the motions

There used to be a time when I believed my migraine attacks would become episodic again. When my children were still school-aged, I put a lot of energy into “getting better.” A small part of me subconsciously believed I would be migraine-free one day. The effort I put into each treatment, new specialist, or complementary therapy was motivated by that belief.

It got me through adolescence, puberty, and young adulthood. It motivated me to be the mother and wife I dreamt of being: one who could play with her kids, go to the movies, or have fun at the amusement park without the fear of migraine ruining everything. From the time I was an eight-year-old third grader to now, I have pushed myself to show up despite the amount of disability I had. Lately, it’s harder to find the energy to show up the way I once did.

I am exhausted, and the energy it takes to keep trying is unimaginable. Many people with migraine find a treatment that works for them; I’m just not there yet. My healthcare team and I are continuing to look for the best treatment for me.

Having migraine disease at this level of severity, complexity, and disability is lonely. Although I always had my family, friends, and support from many, I have always felt alone. The longer I have to cope with daily migraine, the more I have come to accept the unlikelihood of ever being episodic again.

How I keep putting one foot in front of the other

My doctors are some of the best in the headache medicine field, and they’ve supported me continuously throughout this journey. I am blessed to have them, and I attribute being a part of the advocacy community to why I can access these specialists and more aggressive treatments. Access is everything regarding migraine and headache care, and not everyone has that, so I am grateful I can travel out of state for treatments not available near me.

At this stage in my life with intractable migraine, it is all about comfort. What can I do to not feel so burdened by daily pain? Some things that comfort me are soft, comfortable pajamas or sweats, a snuggly blanket, a hot cup of chai tea, and my fur baby. I find myself seeking softness because it juxtaposes the sharp, stinging, nagging pain and discomfort of migraine. Softness soothes, calms, and heals. When I can, cooking is another comfort of mine. And my children will forever be a source of comfort to me. A hug from them calms my pain and eases me into a state of relaxation. 

I don’t know what comes next

Although I have a great healthcare team, intractable pain is an unfair condition that robs people of joy, passion, motivation, and dreams. Progression toward less pain has been slow, and stagnant at this point in my life. My disease has broken me, and I tire of working hard to improve, only to remain in the same place. Seeing people get their lives back when I am still suffering is bittersweet. I hope my turn will come soon.

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Medical Reviewer: Lisa Valente, MS, RD
Last Review Date: 2023 Mar 29
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THIS CONTENT DOES NOT PROVIDE MEDICAL ADVICE. This content is provided for informational purposes and reflects the opinions of the author. It is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare professional regarding your health. If you think you may have a medical emergency, contact your doctor immediately or call 911.