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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. This was followed by quick jolts, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe pain behind one eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks usually start with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; others have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She particularly hated 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 paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient healing records suggest bizarre treatments for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only officially recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Prominent specialists in treating the disorder explain this.

In 1998, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published 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.

In spite of such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 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 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some people.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with abortive therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a