Headaches and migraines are now a regular part of my life
They're debilitating and disruptive, but I have no alternative
I squint while looking forward, trying to get my eyes to focus. My head is throbbing so badly I can feel a pulse in my eyes. Every beat of my heart thumps pressure into my eyes, ears, and throat. I also feel it in my chest, feet, fingertips, and eardrums.
A single tear escapes my eye. This migraine is by far one of the worst I’ve had.
Headaches and migraines have become a normal part of my life, and the pain can be dull and droning or so severe that I can’t think straight and my mind and body just want to shut down. At times, the pain can become so bad that I lose vision in my left eye. It’s as if something is floating in my sight that I can’t rub away.
In the past, I’d rarely get headaches, perhaps only when I didn’t sleep enough or was dehydrated. Then, in late 2020, I nearly died before being diagnosed with atypical hemolytic uremic syndrome (aHUS). Because of that, I must routinely take a lifesaving drug — Soliris (eculizumab) — for the rest of my life. Without it, my immune system will attack my body and my already damaged organs. Unfortunately, headaches are a common side effect of Soliris.
I almost always experience a headache or migraine after taking Soliris, and it can last up to three days. It’s an unrelenting ache I can’t get rid of with any type of medication. Ibuprofen used to be my go-to remedy, but it’s no longer safe for me to take because I have permanent kidney damage.
Headaches and migraines can be debilitating, making it hard to focus on tasks. All I want to do is sleep and hope that it’ll be gone when I wake up.
It’s frustrating that something as “simple” as a headache can be so distracting and painful. Even though I experience several other side effects, such as hair loss, bone pain, muscle spasms, cramping, and nausea, the headaches and migraines are what affect me the most.
Nevertheless, in the big scheme of things, having headaches a few days a month is a small price to pay to stay alive and somewhat healthy.
Note: aHUS 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
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