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It began on a dreary Monday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. It was followed by rapid jolts, like lightning bolts. As each class came and went, the pain eased and then returned with greater force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain around a single eye that persists up to several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks typically start with sudden, severe pain focused on a single eye that peaks within minutes 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 perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children 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 recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing texts propose unusual treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches 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 problem with a major artery that delivers blood to the brain. Leading 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 attacks in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. 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 features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with abortive therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a