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It was a gloomy Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. It was followed by quick shocks, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain behind one eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating pain around a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable attacks 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 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 remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Historical medical records propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent 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 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. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some people.

But consultant specialists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with abortive treatment only. Longer or more severe periods require preventative medications 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 head where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a