Taking extra precautions to rule out internal head bleeding

I don’t get headaches often, but when I do, I absolutely hate them. They can be particularly worrisome for a person with hemophilia.

Because I am not prone to headaches, it is a bit disconcerting when I get one. Having hemophilia A means I am often worried about whether the headache is “just” a headache or a sign of a more dangerous issue, the most concerning of which is a head bleed.

A few months ago, I suddenly started experiencing neurological symptoms. I had daily headaches, major brain fog, and dizziness. When I spoke with my provider, she recommended testing for iron deficiency. The tests showed my levels had dropped to the very low end of normal. I reached out to my hematologist, and we made a plan for iron infusions to help alleviate the issues.

While I waited to begin the infusions, every headache concerned me, particularly when it wouldn’t resolve. One day, I flew to a hemophilia conference in another state, and not long after I landed, I developed a horrible headache. My head felt like it was in a vise, and Tylenol wasn’t touching the pain. Iron deficiency was a likely cause, but the headache felt far worse than in previous days.

Pressure changes on the plane likely exacerbated existing issues. However, I couldn’t take the chance of assuming this was caused only by low iron levels and flying. If it were something more dangerous, hemophilia could cause it to go from bad to horrific in record time. This meant I needed to find my way to a local emergency room to rule out a head bleed.

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Taking action with headaches

If there is even a chance of a head injury in someone with hemophilia, it is critical to consult a medical professional. In fact, my yearly reminders from my hemophilia treatment center include instructions to infuse medication and go to the emergency room in case of potential head trauma.

I ordered an Uber and made my way, alone, to an ER in an unfamiliar city. I had friends at the conference on standby to join me if I needed extra support. The ER physician was hemophilia-informed and did a fantastic job. She took me seriously and understood the need to order a CT scan to rule out a head bleed. Thankfully, about four hours later, I was released with the conclusion that pressure changes and iron issues were the most likely cause. My brain was normal, despite what my mom or siblings might say!

Spending four-plus hours getting my head checked on the first night of a conference wasn’t fun, but it was really important. This is one of the ways we with hemophilia must proactively take care of ourselves. It was my fifth ER visit in less than a year. (The rest were related to superior mesenteric artery syndrome, a rare condition where the abdominal aorta and superior mesenteric artery compress the small intestine, preventing food from passing through.)

In hindsight, I should have requested an evaluation to rule out a mild head bleed when my abnormal headaches persisted — before the flight made them worse. Sometimes I worry I am crying wolf, but ruling out issues is critical. I slept better once I learned the headache was not dangerous.

As a community, we need to remind each other that it’s OK to seek care to rule out a bleed, even when we’re unsure. One day, it may save a life.

Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.