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It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. This was followed by rapid stabs, like lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe pain around a single eye that lasts for several hours.

About one in 1,000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches usually start with sudden, excruciating pain focused on one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have chronic attacks, defined by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “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. Alcohol in her teens, similar to several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to organize daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Historical medical records suggest bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. 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 head. Leading experts in diagnosing the disorder explain this.

In 1998, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Brief cycles with infrequent attacks are handled with abortive therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a