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It began on a dreary weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. Then came quick jolts, similar to lightning bolts. As the school day came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense discomfort around a single eye that lasts for several hours.

About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain around a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value 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 documented across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical medical records propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack passed.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with abortive treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a