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It began on a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain sprang behind my right eye. It was followed by quick shocks, like electric shocks. As each class progressed, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe pain around one eye that lasts for three hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family 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 recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient healing texts propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced 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 pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack passed.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are handled with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a