New Research on the Burden of Cluster Headache

Cluster headache is one of the most painful headache disorders and can interfere with practically every aspect of a person’s life. A new study offers insight into this extremely painful disorder.

Cluster headache is a primary headache disorder that affects 1 out of every 1,000 people. Cluster headache attacks happen in groups (or “clusters”) that come and go in cycles, and each attack comes on within just a few minutes. Pain is typically felt on one side of the head, and attacks can include one or more symptoms, including drooping of the eyelid, redness or tearing of the eye, and a runny nose or stuffiness on the same side as the head pain.

The level of pain felt during a cluster headache attack is known to be some of the worst that a person can experience. People with cluster headache are often restless or spacey due to the severe pain.

Great strides have been made toward understanding cluster headache, but there are still more questions than answers. Caroline Ran, PhD, research specialist in the neuroscience department at the Karolinska Institutet in Stockholm, attempted to address some of these questions with her recent study on cluster headache. Read on below to learn what Dr. Ran had to say about links between cluster headache and other potentially disabling conditions, and how better understanding these links may lead to more effective treatments.

The Disability of Cluster Headache

Dr. Ran notes that in the World Health Organization’s yearly surveys of global health disorders, headache is always listed among the most disabling conditions. However, cluster headache often has an especially disabling impact because of how early the intensity of symptoms appear.

“Cluster headache is a disorder that strikes when you are in your twenties,” says Dr. Ran. “The symptoms will continue during your working years and typically decline when you reach retirement age.”

Being socially engaged and forming relationships or starting a family can be more difficult for people living with cluster headache. Adding to its disruptive impact on a person’s life, cluster headache can take years to get a proper diagnosis.

Dr. Ran says that while there are a lot of studies and data on cluster headache, most of it addresses treatment options and diagnosis, not how patients are affected. This left a big gap in our understanding of the level of disability caused by the disease. “It was obvious to us that cluster headache has a big effect on patients’ lives,” she says. “So we wanted to dig a little bit deeper…to try to get a better picture of the entire burden [of the disease].”

Multimorbidity: Cluster Headache and Mental Health Disorders

Cluster headache often occurs alongside other disorders at greater than average rates—known as comorbidity or multimorbidity. Dr. Ran says her research team did not initially set out to explore cluster headache in relation to other diagnoses, but these links with other disabling conditions quickly became the main focus of the study.

“Our main interest, in the beginning, was mental health disorders,” she says. But as they discovered how common it was for people with cluster headache to have other health problems alongside mental health conditions, “we thought it would be interesting to dig deeper and see if the burden of [cluster headache] was worse in patients who had other disabilities, as well.”

The study used two nationwide registries of patients and split them into two groups: patients with cluster headache living in Sweden in 2010 and another group with similar types and degrees of multimorbidity, sickness, absence and disability.

“The first thing that we found was that multimorbidity was incredibly common,” says Dr. Ran. “More than 90% of the cluster headache patients also had another health issue, which is very high. We didn’t think it would be that high.”

It’s important to note that multimorbidity does not mean cluster headache causes another condition (or vice versa). For example, “we don’t know if mental disorders are more common in [people with cluster headache] because you have a chronic pain disorder and horrible headaches…or if having a chronic disease causes depression,” notes Dr. Ran. “Or if these disorders are biologically related and there could be a biological cause that makes these disorders co-occur.”

Is Cluster Headache a “Male” Disorder?

Past studies have shown that men experience cluster headache nearly three times more than women. This leads many to believe that cluster headache only impacts men, something that misrepresents the data and minimizes the level of disability women experience. In fact, our understanding of who is affected by cluster headache may be shifting.

“There are a lot of misconceptions,” Dr. Ran says. “Cluster headache is seen as a male disorder…but we have discovered that female patients have a more severe burden [than male patients].”

Additionally, the study found that multimorbidity rates were overall higher for women with cluster headache, and a higher multimorbidity rate was linked to a higher number of work absences and disability.

“Things are evolving quickly,” Dr. Ran says. “But information is not always distributed in society—because of this, female patients are at a higher risk.”

Managing Cluster Headache

Dr. Ran and her team’s work offers a promising look at the future of cluster headache research, but their efforts are only the beginning. More research is needed to understand why people with cluster headache more often experience certain other medical conditions like mental health issues.

However, the knowledge that multiple conditions are more likely to occur together can help patients and doctors when it comes to diagnosis and treatment plans. “If you have several diagnoses, it becomes even more important to have good healthcare and to have good control of your headache,” Dr. Ran says.

The foundation of any treatment plan is open and honest conversations with your doctor. The road to finding the correct treatment plan may be a long one, so the sooner you get started, the better.

“Sometimes, it can take a very long time before you find the best [treatment plan] for you… [And] you might not be able to get the correct help when the disorder is at its most severe point because it’s very incapacitating,” says Dr. Ran. “Talking to your doctor about everything in advance makes it easier to get the correct help.”

Research like Dr. Ran’s sheds more light on this debilitating disease and opens the door for more effective treatments in the future. Click here to read the full study.

For more of the latest research and developments in migraine, cluster headache and other headache disorders, visit our Resource Library.

The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. To learn more about all of your migraine treatment options, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.