What “chronic migraine” looks like for me

I live with chronic migraine. For me, that means I have a low-level migraine 24/7/365.

I know many of us think ‘low-level’ & ‘migraine’ don’t belong in the same sentence, and I get that, really I do. But for me, they can in fact coexist. I am never symptom free — there is always something (usually several somethings) going on. My migraine disorder involves head pain plus a host of other symptoms: nausea; vertigo; light, sound, smell, and motion sensitivity; confusion and memory problems; burning and pressure in my sinuses and behind my eyes; vision loss and visual hallucinations. I spend my days with these various symptoms flitting between a 2 and a 4 in shifting combinations, wondering what’s next.

Then once or twice a day I get what most people think of as a migraine ‘attack’ — throbbing head pain, symptoms spiking to an 8, and all I want is a dark room, an ice pack, and a pain killer that might actually work. If I’m lucky, the triptan works, and I return to my pre-attack, ‘low-level’ state. If I’m not, I move into status migrainosis and end up in the ER a few days down the road, trying to break the beast back down to a manageable 2-3.

I was most of the way through my PhD when this crashed down on me. After trying to finish my dissertation for 2 years, last month I filed for indefinite medical leave from my doctoral program. I cannot work like this. I cannot think like this.

My kids do not remember me healthy. My friends are slowly drifting away — they do not know what to do, and I’m so rarely well enough to get together or follow through on plans that I can’t blame them for finding other people to be with. But I’m lonely.

I’ve had MRI’s and CT’s. I’ve tried every prevention medication out there. I have a Cefaly. I take magnesium and CoQ10 and B2. I get Botox shots every 12 weeks. I’m on my 6th triptan. My veins are wrecked from IV’s in the ER. I am running out of options. I am running out of hope that I will get better. I am starting to accept that this is how my life will be, and I am afraid.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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