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What It Feels Like to Experience Intractable Migraine: A Migraine Attack That Just Won’t Stop

What It Feels Like to Experience Intractable Migraine

Since my diagnosis of chronic migraine, I have navigated multiple bouts of intractable migraine (IM) and I’m intimately familiar with its persistent and brutal pain. Intractable migraine, also known as status migrainosus, affects less than 1% of the migraine population. Clinically, intractable migraine refers to an attack that is unresponsive to typical treatments and lasts for over 72 hours. In mine and many other cases, they can last much longer, spanning days, weeks, or months at a time.

These attacks disrupt nearly every aspect of my life, but to those who haven’t experienced these long bouts of debilitating pain, it can be hard to understand the magnitude of what I’m going through. By sharing about the reality of intractable migraine, I hope we can expand the way people view migraine disease and the kindness extended to every migraineur facing their own unique battle.

Testing My Resilience

I clearly remember the engulfing helplessness of my earliest intractable attacks. My understanding of migraine disease was limited to what I had seen family and friends experience, and I was terrified as my own attacks spun out of control, increasing in duration, severity, and frequency.

Less than 24 hours after my first emergency department (ED) visit for migraine, I awoke the next day groggy from IV meds. Within my first few moments of consciousness, the unmistakable stabbing pain behind my eyeballs began to pulse. Through tears, I broke down and told my husband how desperate I was for a break. I couldn’t believe I was still in pain and I was worried that my resilience had run out.

In the same breath of despair, I was confronted with the hard truth that no matter how “done” I was, I could not surrender; there was no way to force the pain to stop. It had never occurred to me that migraine pain might be something the emergency department couldn’t “fix.” That next day, I had to face the fact that even doctors trained to respond to life-threatening emergencies could not stop my migraine attack from raging on. This realization hit me like a punch in the stomach, leaving me feeling hopeless and afraid.

What All-Consuming Pain Really Feels Like

Even though today I am better equipped to move through intractable migraine attacks, the emotional and psychological toll of the constant, high level of pain that goes on and on can still result in depersonalization–a feeling of observing myself outside my body–and times where I hardly recognize myself.

In the thick of an intractable attack, trying to look in the mirror through the fog of unrelenting pain and recognize myself behind weary eyes often feels surreal. Every inch of my face and head become sore to the touch, and my eyebrow bones, temples, jaw, and occipital muscles all feel bruised. The layers of pain become all-consuming shadows I cannot shake, weighing down my every move.

During bouts of intractable migraine, basic “life administration” tasks slip through my fingers. Emails and texts go unanswered. I have to rely on others to cook my meals and I am homebound (or bedbound) for days. Time blurs as I repeatedly reach for every coping skill in my migraine toolbox. Crushingly, despite doing everything “right,” the pain sometimes just continues to deepen–a canyon of ache, expanding as the attack roars on.

Traditional medications often do not cut through the ferocity of intractable migraine, and trips to the ED, steroids, outpatient infusions, or even inpatient hospitalization can be necessary. In our current medical system, my pleas for help are usually met with slow responses. Urgent messages can take up to 48 hours to be read, and inpatient interventions even longer to schedule. All the while, minutes crawl by, and my helplessness, exhaustion, and pain soar.

The factors that contribute to the onset of my intractable attacks are often a mystery, as are the reasons they ultimately recede. I have found that although a particular “solution” might work once, there is no guarantee it will the next time. 

When the entrenched pain does lighten, even nearly imperceptibly, it’s hard to trust that it will last. This type of treatment-resistant pain physiologically shifts the way the brain processes stimuli. Moving through the world in this tender state feels like I am navigating a minefield, fearful that the smallest misstep might set the whole thing aflame again.

How I Cope Through the Storm

I’ve learned over the years to navigate intractable migraine attacks with less panic and more presence. I know that mindfully calming my nervous system and shifting my body out of a state of fight or flight is one of the most powerful tools in my arsenal to weather high pain with more ease. Every small comfort I can reach for–from blackout curtains to cozy clothing to breathing exercises–is a way I can signal safety to my body, even while an attack rages on.

When I worry the waves of harsh pain might swallow me whole, I remind myself I do not have to feel brave to be brave. I think of all the times I have made it to the other side of impossible pain before, and gently remind myself that courage rides on my inhales and exhales, whether I feel it there or not. I reassure myself that by simply continuing to breathe, I can and will reach calmer waters again.

The debilitating nature, both physically and emotionally, of these cycles of continuous pain is difficult to describe to one who has not lived it. For those of us who have, please know that although your battle might often feel invisible, it is very real, and you are so very brave.

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Medical Reviewer: William C. Lloyd III, MD, FACS
Last Review Date: 2021 Oct 5
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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.