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It began on a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. This was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort around one eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient healing records propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the episode eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with acute treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a