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It was a overcast Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. This was followed by rapid shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain behind one eye that lasts for three hours.

About one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches typically begin with sudden, severe pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have chronic attacks, defined by the absence of long 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. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms 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 across the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.

Historical medical texts suggest bizarre treatments for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only officially recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack passed.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief bouts with occasional attacks are handled with abortive therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a