Cluster Headache is a misunderstood and under-recognized primary headache disorder. On March 21st, we celebrate Cluster Headache Awareness Day to share the realities of this neurological condition nicknamed “Suicide Headaches.” This day for awareness started in the United Kingdom in 2018 by OUCH – Organisation for the Understanding of Cluster Headache. United States organizations, including Clusterbusters, have since adopted the day because this is the time of year patients see an increase in attacks or start an episodic cycle due to the Spring Equinox.

Seasonal changes and cluster headaches seem to go hand in hand. The difference in the amount of daylight triggers changes in the hypothalamus that impact “clusterheads,” and recent research has shown a periodic hypothalamic dysfunction in patients. The Spring and Fall are the primary seasons when clusterheads see an uptick in attack frequency or the onset of a cycle, which causes many to avoid making plans and experience signs of post-traumatic stress disorder (PTSD).

#UndertheHat Photos Spread Awareness & Hope

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Part of the international day for cluster headache awareness is the #UndertheHat social media initiative, where clusterheads post a photo wearing a hat using the hashtag and share their experience living with the condition. These photos and stories help to put a face to cluster headaches and give hope to those who are in the midst of a terrible attack or not responding to treatment options. Cluster headaches were historically thought to be a middle-aged Caucasian man’s disease, but people of all genders, ages, and ethnicities can have these debilitating attacks.

There are other ways to get involved, such as starting a fundraiser or awareness event in your hometown and donating to the cause. Cluster Headache Awareness Day is not the only time of the year that Clusterbusters and other headache nonprofits advocate for the condition. The annual patient conference by Clusterbusters each September brings together hundreds of patients and their loved ones to learn and share their experiences. We also have an event every June, the #CureforCluster VIRTUAL 5k run/walk, that invites people worldwide to participate and raise funding for research.

The Basics of Episodic and Chronic Cluster Headaches

There are three categories of primary headache disorders: Migraine, Trigeminal Autonomic Cephalalgias, and Tension-Type. Cluster headaches are the most common form of the Trigeminal Autonomic Cephalalgias, affecting around one in every thousand people. The attacks come on quickly and are likened to a hot poker or ice pick behind the eye and temple. Medical experts have said cluster headaches are “probably the worst pain that humans experience.” The most extensive survey ever conducted with cluster headache patients found that respondents marked cluster headaches as worse than childbirth, kidney stones, pancreatitis, gunshot wounds, and migraine attacks.

Cluster Headaches come in episodic and chronic form, with some clusterheads switching between the two and dubbed “Chronisodic.” This condition involves strictly one-sided stabbing pain with precise timing of daily attacks that last 15 minutes to 3 hours (rarely longer) and can occur eight or more times in a 24-hour cycle. The pain is severe enough that clusterheads can’t sit still, often pacing, rocking, and screaming. The attacks peak within a few minutes and come with autonomic symptoms on the affected side of the head, including:

• Red and/or tearing eye
• Swollen eyelid
• A constricted pupil and/or drooping upper eyelid
• Congested or running nostril
• Facial and forehead sweating

View the Diagnostic Criteria for Cluster Headache by the International Headache Society.

Despite having a distinct clinical picture, cluster headaches are often misdiagnosed as migraine disease, sinusitis, allergies, and other more common conditions. It takes an average of 5.3 years for a patient to receive the correct diagnosis and often longer for appropriate treatments, which may be partly due to the unawareness of cluster headaches.

Cluster headache treatments are unique with high-flow oxygen being the most efficient, and psilocybin mushrooms and LSD are a surprisingly effective treatment for both preventing and treating attacks.

Celebrating Cluster Headache Awareness Day helps people worldwide understand the impact the condition has not only on patients but on their loved ones and livelihoods.

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