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It began on a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. This was followed by quick jolts, like lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort behind one eye that lasts for three hours.

About 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, excruciating pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. 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 childhood. Alcohol in her teens, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical 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 neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.

Ancient healing texts propose unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.

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

Cluster headaches were only formally recognised by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent 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 attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.

National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some people.

But consultant specialists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are managed with abortive treatment only. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a