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It was a gloomy Monday morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation sprang behind my one eye. This was followed by rapid jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then came back with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients reported suicidal thoughts during 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 episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She especially 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 most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical texts propose unusual remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known people.

But leading specialists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are handled with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a