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It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden pain sprang behind my right eye. This was followed by quick shocks, similar to electric shocks. As each class progressed, the discomfort eased and then came back with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort behind one eye that persists up to three hours.

About one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor 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 many triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. 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 office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around erratic attacks took its toll. She particularly 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 incapacitation caused by the worst episodes. “It robs you of the simple freedoms 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 history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

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

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading experts in treating the condition note this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known people.

But consultant specialists believe the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short bouts with infrequent episodes are handled with acute therapy alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a