I would rather put on a strong face than admit to anyone the sheer amount of pain I’m enduring.
I’m less focused on describing the actual pain at doctors’ appointments. Instead, I distractedly worry about whether I will be believed. I’ll reason with myself, thinking I can deal with these symptoms on my own with over-the-counter remedies, stretching, massage, or my all-time favorite, ignoring and pushing through.
That is what it’s like to live with medical post-traumatic stress disorder and a rare disease that yields chronic pain.
I suffered from chronic migraines for four years before receiving a diagnosis and treatment. I blame this partially on minimizing my symptoms and partially on my own misunderstanding of what a migraine is.
My adventures with migraines
Migraines began breaking through my skull a few years ago, when I dabbled with an experimental porphyria treatment to eliminate problematic hormone spikes in my cycles through a state of medically-induced menopause. They made a home in my head and haven’t left. In fact, by the time I was finally put on medication to prevent my migraines, I had headaches more often than not.
My migraines materialize if I’ve overexerted myself, or as a yellow light — a warning sign for a mounting acute hepatic porphyria (AHP) flare. They start sneakily as annoying pain in the front of my skull, a sinister darkness lurking behind my right eye that I readily ignore. Then, my trapezius muscles start twitching and knotting up more than usual. Soon, darkness pools and spreads to the side and front of my skull. If I catch it early enough, some yoga-inspired stretching can be helpful. (Some of my favorites include Child’s Pose, Plow Pose, and assisted Downward-facing Dog.)
If that particular migraine is a runaway train, I may have no choice but to put my life on hold, take medications, and lie down with an ice pack stuffed under the base of my head. My migraines are tons of bricks slamming against my forehead, sledgehammering my brain against my skull and twisting knives into my neck and shoulders. For years, I responded to this pain with fistfuls of acetaminophen, chiropractic care, physical therapy, stretching, heat pads, ice packs, dry needling, and neck hammocks.
My headaches were frequent, severe, and would last for days. But as I wasn’t seeing an aura, didn’t have light sensitivity, and wasn’t always nauseous or vomiting, I figured they were simply bad headaches. I’ve since learned that migraines don’t necessarily have to check all of these boxes.
As usual, prescription medication was my last resort. AHP attacks can be triggered by medication, so I live by the porphyria-safe medication list. In fact, both my caregiver and I have it saved on the home screens of our phones, as it’s come in handy during emergencies. Fortunately, there are several safe migraine treatment and prevention options, and they are beginning to improve my quality of life.
The first time I took something for my migraine was a brisk day last October. A doozy of a headache was beginning to rage and threaten my plans for a virtual class I had that evening. With trepidation, I rose up on tiptoe to remove the medicine bottle from the top shelf of my cabinet.
Knowing this medication was classified as “safe” helped ease my mind, as I punched out the dissolvable pill and placed it on my tongue. Within 30 minutes, the clouds parted. My head stopped throbbing, and the granite of my shoulders loosened up a bit.
That evening, I was mindful, immersed not in the turmoil within my head but the lessons on my screen. I could hardly believe how effective that first dose was in addressing my symptoms. Since then, I have started on another safe medication that prevents my migraines. So far, so good. As a bonus, it has also lessened the chronic pain in my shoulders that until now I blamed on AHP.
Migraines and porphyria
There is a noticeable lack of understanding about migraines and AHP. Through interactions with porphyria friends, I can anecdotally conclude that they often go hand in hand. One recently published study in the journal The Patient found that 10 of 19 AHP patients reported headaches as a symptom.
Do you live with AHP and migraines? Are you receiving treatment for your migraines? What have you noticed about the causes? Please leave comments below so we can learn from one another.
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?