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It began on a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. It was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the pain eased and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches returned frequently that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain around one eye that lasts for three hours.

About 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing texts suggest unusual remedies for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially classified by global medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant specialists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Brief bouts with occasional episodes are managed with acute treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve activity.

The national guidance need updating to reflect a