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It began on a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain sprang behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense pain around a single eye that persists for three hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches usually begin with abrupt, severe agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit 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 several causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

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

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading experts in treating the disorder explain this.

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

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant specialists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short bouts with occasional episodes are handled with acute therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a