Webinar Recap: Cluster Headache Awareness and Advocacy

Cluster headache is often described as the most painful headache disorder, yet it often goes undiagnosed. Learn about the common triggers, symptoms and treatments for this debilitating headache disorder.

Even though cluster headache is one of the most painful types of headache disorders, it can take years to receive a diagnosis and treatment. One of the first steps in taking control of your care and advocating for your needs is learning about the signs and symptoms of cluster headache.

We spoke with Eileen Brewer, President of Clusterbusters, and Gillean Dean, American Migraine Foundation advocate and cluster headache patient, about the disabling impact of cluster headache. Learn what they had to say about managing treatment and Dean’s advice for people living with cluster headache.

How common is cluster headache?

Compared to migraine, cluster headache is relatively rare. “One in a thousand people have cluster headache—so maybe 350,000 people in the United States,” says Brewer.

Many people never encounter someone who lives with cluster headache, and there is a significant gap in awareness about this painful condition. Brewer notes that one of these gaps is an understanding of what a cluster headache attack actually looks like. “There are a few YouTube videos that we share over and over again because nobody wants to be videotaped while they’re that vulnerable and going through [an attack],” she says. 

Dean notes that in the past, even paramedics have asked her what they can do to better help someone experiencing a cluster headache attack. More education about the signs and symptoms of cluster headache would help prepare loved ones and bystanders to respond to a person experiencing an attack.

What are the symptoms of cluster headache?

Cluster headache attacks occur in groups, with each attack lasting anywhere from 15 minutes to three hours and causing intense, unbearable pain. Dean says the pain of an attack is often described as worse than being shot, stabbed, giving birth or breaking bones. Pain is typically felt on one side of the head, and it is common for people experiencing cluster headache to have red or teary eyes and a runny nose on the same side as the pain is felt.

Cluster headache is not the same thing as migraine. Brewer notes that people who live with migraine often want to lay down and be completely still and quiet during an attack, whereas a person experiencing a cluster headache attack is more likely to be pacing and restless. Additionally, cluster headache attacks start and stop suddenly throughout a given day, with cluster cycles lasting days or months before a period of remission that can last months or even years. By contrast, migraine attacks go through different phases, and the severity of symptoms often gets worse gradually over time.

What are common triggers for cluster headache?

Dean says her top trigger is loud, sharp noises. “I can be watching a movie and somebody rings a bell and, snap, there I go,” she says. If she’s in a grocery store and an employee drops a plastic tray used to carry and store baked goods, that loud noise can be a trigger. She says intense stress can also trigger cluster headache attacks.

However, common triggers for cluster headache vary significantly from person to person. Brewer notes that in her experience, Dean’s noise trigger is unique, but she has met people with equally unique triggers like changes in elevation or pressure. 

Triggers can also vary depending on whether a person has chronic or episodic cluster headache. For example, alcohol is commonly listed as a cluster headache trigger, but even this isn’t consistent for everyone living with this condition. “If you [have episodic cluster headache] and you’re in a cycle, drinking alcohol will trigger an attack almost immediately for many people,” says Brewer, “but if they’re not in cycle, they can drink alcohol and it’s fine.”

What are some ways to manage cluster headache?

There are a variety of treatment options for cluster headache. Galcanezumab (Emgality®) was the first FDA-approved preventive treatment for episodic cluster headache and is given as a monthly injection. Additionally, some people have found non-invasive vagus nerve stimulators (gammaCore)—devices you hold to your neck to stimulate the vagus nerve—to be helpful in preventing cluster headache attacks. While sumatriptan has been shown to stop cluster headache attacks when taken as an acute treatment, it’s not a reasonable solution for people who have multiple attacks per day.

High-flow oxygen often helps to shorten the length of a cluster headache attack. “I have an enormous tank by my bed,” says Dean. “Whenever I get an attack, if I can get to my oxygen, it can help keep it down to maybe 15 minutes rather than two and a half hours.” She also carries smaller tanks in her car and uses a non-rebreather mask specially designed to maximize the amount of oxygen she gets in each breath. 

People living with cluster headache have also used psychedelic mushrooms containing psilocybin as a way to treat their head pain and headache frequency. While psilocybin is not officially recognized as a treatment for cluster headache, people have reported that psilocybin mushrooms can alleviate pain and reduce the frequency of attacks when taken in sub-hallucinogenic doses.

Pain management strategies like mindfulness and meditation may also help. While meditation doesn’t eliminate the pain of an attack, Dean credits it with helping her to cope mentally and emotionally with the disabling impact of cluster headache on her daily life.

Can cluster headache be misdiagnosed as migraine?

Clusterbusters is a headache advocacy group that supports research on cluster headache treatments and management strategies. Through surveys, Clusterbusters has discovered new information about cluster headache they hope will aid in the development of better treatments and methods of diagnosis in the future. 

For example, cluster headache was previously thought to affect men at a higher rate than women. However, Brewer says their surveys revealed that two to three out of every five people with cluster headache are women. “A lot of women are misdiagnosed with migraine when they really live with cluster headache,” she says.

The Clusterbusters website has a Computerized Headache Assessment Tool (CHAT) that may help people identify whether their symptoms correspond with those of a primary headache disorder like cluster headache or migraine. It can also be a helpful resource for people who think they have been misdiagnosed. The survey-type tool takes about 20 minutes to complete. “It can help you to really [narrow down] your diagnosis and give you tools to go back to your doctor and talk to them about what’s going on,” says Brewer.

The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, 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.