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It began on a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation erupted behind my right eye. This was followed by quick shocks, reminiscent of electric shocks. As each class progressed, the discomfort eased and then returned with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind a single eye that lasts up to several hours.

About 1 in 1000 people suffer by the condition, and men are more often diagnosed. Attacks typically begin with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, 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 arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to organize life around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable 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 small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical medical texts suggest unusual remedies for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent experts in treating the disorder explain this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches 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 dentists misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known people.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with abortive therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. 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 reduces nerve signals.

The official guidance need updating to reflect a