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It began on a dreary weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation sprang behind my one eye. Then came rapid jolts, like lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with intense discomfort behind a single eye that persists for several hours.

About one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She especially disliked 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 most severe episodes. “It robs you of the small liberties we don't appreciate 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 throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing texts propose bizarre treatments for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Leading specialists in treating the disorder explain this.

In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation 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 progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the approach.” Brief cycles with infrequent attacks are managed with abortive therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a