Navigating the debilitating pain of a sickle cell headache
It feels like someone has been taking a hammer to my head for weeks
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Today, I woke up with a severe headache — again! It’s been four long, exhausting weeks of feeling like someone has set up camp behind my eyes with a hammer. The ache pulses before I’m even fully conscious, as if sickle cell disease is trying to remind me who’s in charge. Spoiler alert: It’s not me.
Of all days, it had to be today. My schedule is packed so tightly that it looks like I lost a bet with my calendar. I have an eye exam this morning — finally. My vision has been getting blurrier over the past few months, another joyful consequence of sickle cell disease, apparently. I waited four months for this appointment, juggling cancellations and referrals, hoping someone would tell me what’s going on with my sight. Tonight, I’m flying to Europe for the weekend for my friend’s wedding. It’s a short trip, but an important one.
For a moment, still wrapped in my blankets, I tell myself that breakfast will help. Food, water, maybe some tea; something has to take the edge off, right? So I drag myself to the kitchen gingerly, each step sending a soft throb through my temple. I scramble some eggs and put on the kettle. I sit, breathe, and hope.
I was wrong.
Halfway through the meal, the headache roars to life. It escalates from a heavy pulse to a brutal, blinding force. My vision tightens at the edges, making me lose track of the world around me. Time feels warped, stretching out, thinning, and snapping back. I close my eyes, trying to breathe through it, but the pain only sharpens, impatient.
I don’t know how long I sit like that, waiting for the pain to pass. By the time I resurface, the room looks the same, but something is missing. Something important. Something …
The eye exam! My appointment. Distracted by this intense pain, I missed it. After four months of waiting, the headache stole the one opportunity I had to understand what was happening with my vision. I feel a wave of frustration, guilt, and disappointment mixed with simmering anger that I try not to direct at my own body. I hate pain — not just because it hurts, but because of everything it takes from me without asking.
Eventually, the headache subsides to a dull ache. It’s not good, but it’s manageable enough that I convince myself I can still make the trip. I pack, double-check my documents, take some medication, and head to the airport.
Surprisingly, the plane journey is smooth — thankfully, because international travel is hard enough for me. There’s no turbulence, no sudden spikes in pain, and I even allow myself to relax a little. It feels like a tiny victory. I listen to some music, sip some water, and close my eyes. For a moment, I feel as though things might just be turning around.
Then we land.
Right on cue
The moment the wheels hit the ground, it’s as if the headache has been waiting for its cue. A sharp, crushing pain floods my skull. I grit my teeth and breathe slowly, trying not to panic. I tell myself that food will help. I tell myself that rest will help. I tell myself that medication will help. I try all of these. Nothing works.
By the time I reach the wedding, I’m running purely on determination and guilt for not wanting to let my friend down. My outfit is perfect, the venue is breathtaking, and the air is filled with laughter and music, but all I can focus on is the pounding behind my eyes. I feel antisocial, disconnected, floating at the edge of the celebration like a ghost. I can’t concentrate on conversations; the words swirl together. I nod, smile weakly, and excuse myself often.
Still, I make it through the ceremony. I even last through half of the reception. But eventually, the pain sharpens to the point where I can no longer pretend. I slip away from the party with whispered apologies, make my way to the hotel, and collapse onto the bed.
Sleep comes quickly, heavy and absolute.
When I wake up, the headache is still there — still burning, still unrelenting, and still claiming pieces of my life that I never agreed to give up.
Lying in the dim hotel room, I stare at the ceiling and wonder why I am being punished. I know it’s not really punishment, not in the cosmic sense. Sickle cell disease doesn’t negotiate or reason; it just is. But in moments like this, it’s hard not to question why life seems to be asking me to endure more than seems fair.
This is just another day in my life, navigating the challenges of living with sickle cell-related headaches.
Note: Sickle Cell Disease 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 Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
Ahmed
This is a sad entry 😞😞 I hope you are feeling better now