Ajovy is Working, But I’m Still Sick
We’ve said over and over that there’s no cure for migraine, and I’m living that truth now more than ever.
Improvement from Ajovy
Ajovy is working. I’m in my fifth month of treatment, and haven’t had any pain above a 6 on my personal pain scale. Anything above 4 is rare. I haven’t been to the ER in over a year, partly because they can do nothing there now to treat me and partly because I haven’t been completely overwhelmed by pain in a long time.
Experiencing the same migraine triggers
But I still wrestle with all the effects on my mind and body of a chronic neurological illness. The migraine attacks come frequently, resulting from all the same triggers, especially when they are stacked. Weather changes, certain foods and odors, changes in my sleep schedule, emotional stress – together or separately they still equal migraine. The migraine just feels very different from what I used to experience.
Pre CGRP migraine pain
At its worst, the head pain does get uncomfortable. Back in the dark days, when I would get up into 8 or 9 on the pain scale, I would writhe and twist in bed, arching my back and turning my neck until I found some unlikely position that would make the intense, excruciating pain slightly more bearable so I could try to get into a “zone” and separate a bit from my body. Wait the headache part of the migraine out, with additional help from ice, heat, sleep medication, whatever. I’m sure at those times I looked possessed by a demon, and in a way, I was.
My head pain now feels masked
The demon is still there, but it’s tiny, and confused. When I get what I now consider a “bad” migraine, the head pain at its worst feels a lot like the momentary reprieve I would get by contorting my body and numbing my skin with ice during a level 9 of the past. Instead of the tiny reprieves, I now get tiny flashes of the severe pain that used to assail me. Reminder bursts. But the majority of the headache feels masked, covered up, numbed, buried in brain cotton. I imagine the demon struggling to get out. But it only can in quick stabs before it is subdued again by the CGRP antagonist happily making its home in my bloodstream.
My new migraine attacks feel like influenza
The attacks all begin as they used to. Fatigue, depression, anxiety, strobe-like flashing in my peripheral vision; extra sensitivity to light, noise, and odor; hot flashes, nausea. Pain around my eyes that feels like a sunburn, usually one-sided. Throbbing, aching. What these attacks feel like, to me, is influenza. I even have a fever sometimes. In other words, despite the head pain being mild in comparison, I still feel sick in the plainest sense of the word. I feel not well, like I need to lie down as soon as I get home from work. Happily, I rarely have to leave early; my shifts at the library are the perfect length of four hours, usually ending right when symptoms begin to make it unbearable to be on my feet. I miss work about the same amount as my colleagues, and when I do, it’s often because one of the girls is sick, not me.
Better physically, worse emotionally
I feel like depression has replaced severe head pain in my migraine attacks. Trading agonizing pain for heart sludge isn’t exactly what I would have hoped for, but I pretty much expected it, given that in my own brain, lack of pain seems to cause existential emptiness for whatever reason. I’ve noticed it for years – any time I have temporarily felt a bit better physically, I have felt worse emotionally. The same is true now.
Current feelings are better than the dark days
When the attack passes, I wake up and my heart feels light and unburdened. I deal with postdrome and go about my life and wait for the next attack, just like I used to. The depression, which ebbs and flows between migraine cycles, does make it hard. Even when I’m feeling okay I am often totally unmotivated and fatigued. I should be able to get a lot of stuff done now, right? But I think I used to be more productive than I am now. I do a lot of sleeping, a lot of reading. I am out of touch with friends and off social media, not writing, just… being.
I could still be adjusting. Some days, I feel pretty dang good. Maybe the depression aspect will fade with time, but it’s always possible that when it does, the pain will return. I would definitely rather be this unmotivated, uncommunicative husk with the flu than be writhing in pain, vomiting, running out of acute medication, crying in frustration.
But, either way, I am still sick.