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It began on a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense sensation sprang behind my right eye. This was followed by quick shocks, similar to electric shocks. As the school day progressed, the discomfort subsided and then returned with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort behind one eye that lasts up to three hours.

About one in 1,000 people are affected by the condition, and males are more often affected. Cluster headaches usually start with sudden, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely 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 partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical records suggest bizarre remedies for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

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

The disorder were only formally classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode passed.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.

But leading specialists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a