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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my right eye. Then came rapid shocks, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain around one eye that persists for three hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, severe pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very lucky 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 time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers 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 description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing texts suggest unusual treatments for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Leading experts in treating the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But leading neurologists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent attacks are managed with acute therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a