Headaches are extremely common. In fact, up to 1 in 20 adults has a headache every day. Sometimes these headaches are related to something simple like caffeine intake, stress, or even dehydration.

But other times a headache can be a warning sign that something is wrong — including in people with bleeding disorders like hemophilia.

Not only can regular blood loss contribute to conditions like anemia, which cause headaches, but it also can be a sign of intracranial hemorrhage (ICH) or a brain bleed. ICH is one of the most serious events someone with hemophilia can experience. In fact, despite medical advances, the mortality rate (death rate) for ICH is still about 20 percent.

If you’re experiencing regular headaches and you have hemophilia, it’s vital to see your doctor for an evaluation. It’s also important to understand the connection between hemophilia and headaches, so you know why you might be experiencing them and when to get emergency care.

Here’s what you need to know about blood loss and headaches.

How Does Blood Loss Trigger Headaches in Hemophilia?

When you have hemophilia, the blood loss you experience can make you more susceptible to anemia, a condition most often caused by being deficient in iron.

Headaches are often a symptom of anemia. In fact, a 2022 review found that 80 percent of people who had iron-deficiency anemia experienced headaches and 36 percent experienced migraine attacks.

These headaches could be related to the role of red blood cells, which are often low when you have anemia. Red blood cells are responsible for getting oxygen to your body, including your brain.

When you have low red blood cells, your brain may not get the oxygen it needs, which can change how it functions and cause headaches. It can also cause dizziness, muscle weakness, shortness of breath, and blurry vision.

Even if you don’t have anemia, blood loss can still cause headaches often due to a low blood volume and lower oxygen delivery to your brain. The same principle applies — your brain isn’t getting as much oxygen as it needs due to the lack of circulating red blood cells, which can cause headaches.

People with hemophilia can also experience headaches from external sources. Lost sleep due to stress, dehydration, or a sinus infection can all cause headaches. The key is to get evaluated, rather than make assumptions about the cause. Your headache could be a sign of something more serious when you have hemophilia.

What Is the Cause of Hemophilia-Specific Headaches?

Sometimes people with hemophilia will have headaches that are caused by a brain bleed — a serious situation that should never be ignored. In fact, experiencing a brain bleed is one of the more significant risks for people with hemophilia and puts you at a high risk of dying if left untreated.

In people with hemophilia, this type of brain bleed may happen after a minor bump on the head, but it can also occur without a clear cause. One study found that many brain bleeds in people with hemophilia were spontaneous. Hypertension (high blood pressure) was common among adults who had them.

People living with severe hemophilia (factor levels below 1 percent) or with inhibitors also have a higher risk of spontaneous ICH.

Most bleeding episodes in hemophilia — 70 percent to 80 percent — occur in the joints and muscles. These bleeds are much more common than brain bleeds.

Taking medications such as desmopressin (DDAVP) to stop or prevent bleeding is another potential cause of headaches in people with hemophilia. Other potential side effects include flushing, fatigue, and tachycardia (fast heart rate).

It’s also possible to get a headache from other types of bleeding, such as a nosebleed or even a throat or neck bleed.

With a throat or neck bleed, the most common symptoms include neck swelling, choking, trouble swallowing, and trouble breathing. But you may also get a cough headache, especially if you’re coughing a lot. In fact, an extreme coughing episode after a bad cold or the flu can actually cause a throat bleed.

Like brain bleeds, this type of bleeding needs immediate medical attention because the bleeding can cut off your airway and increase your risk of dying.

A Word of Caution

If you do suspect that you have a brain bleed, don’t apply heat. It may also be best to avoid taking pain medications until you’ve been evaluated, especially because these drugs can mask your symptoms.

If you need pain medication after you’ve been treated, acetaminophen is sometimes allowed, but ask your healthcare provider first. You will usually need to avoid taking aspirin, ibuprofen, and naproxen. These medications may make bleeding worse and prevent clotting, so they are not recommended.

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If you’ve been diagnosed with hemophilia and experience headaches, how do you manage both conditions? Let others know in the comments below.