It started in 2023 with something that didn’t make sense. I would wake up with a terrible headache after a full night of good sleep. How do you sleep well all night and wake up in pain? Something in me was suspicious, but I did what most of us do. I took a painkiller and moved on.
The headaches kept coming and going, and I never took them seriously. Then one morning I couldn’t even open my eyes. Taking a single step felt like walking on my head. For the first time, I couldn’t drive myself to the hospital, so I called a friend to come and take me.
At the hospital, I was told I had typhoid. I remember thinking it didn’t fit. I had no other typhoid symptoms, only that massive headache. But I took the medicine, along with some very expensive painkillers, and the headache faded. When it did, I talked myself into believing they were right, even though the back of my mind kept saying otherwise.
I carried that doubt until April 2025. I went on a birding trip, a long day of hiking up and down a mountain. I came back tired, with a headache, which seemed normal. Then I collapsed in the bathroom without even knowing I had gone in. I woke up in a hospital bed, on oxygen. That was the moment I knew something was terribly wrong.
Looking back, the signs were there all along
Since my diagnosis, I’ve found myself remembering things from much earlier in my life.
In higher primary school, I had a headache so bad I couldn’t open my eyes. I remember being given medicine, and I remember that some people didn’t believe I was really sick. They thought I was pretending. The pain was real.
Even earlier, when I was about five or younger, I went to town with some older girls, friends of the family. I remember blacking out, and then waking up at home, where my mother gave me bread on a glass plate. I ate it, stood up to take the plate to the kitchen, and collapsed right next to the bed. The plate broke. That memory has stayed with me my whole life.
I also remember being sick a lot as a child and throwing up often. My parents would me to the doctor, but nothing close to what I have now was ever diagnosed. Those symptoms faded as I grew up, but the headaches kept returning. For years the answer was always the same: take a painkiller. Then, as an adult, they became persistent and severe.
I can’t say for sure what was connected to what. I was a child, and nobody was looking for the pattern. But looking back, I wonder how different things might have been if someone had.
What I wish I had done differently
- I should have listened to my gut. Back in college, a friend told me never to ignore a headache, especially one that greets you in the morning after a good night’s sleep. I forgot that advice when I needed it most.
- I should have seen a doctor instead of self-medicating. Painkillers quiet the symptom. They don’t tell you what’s causing it.
- I should have asked for a second opinion, and even a third. When one diagnosis doesn’t fit what you feel, you’re allowed to keep asking.
If you’re reading this with a headache that keeps returning, or a diagnosis that doesn’t feel right, please don’t wait as long as I did. Your body is giving you information, and you deserve answers.
If you’re facing something similar, I made a free checklist of questions to ask your care team. Get it here, free.
This is my personal experience, not medical advice. If you’re worried about your health, please speak to your own doctor.