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It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. This was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches returned frequently that fall, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe pain behind one eye that lasts up to three hours.

About one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks typically begin with sudden, severe agony around one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky 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 simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Historical healing texts propose bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief bouts with occasional attacks are handled with acute treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a