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It was a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my right eye. Then came rapid shocks, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain behind one eye that persists for three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks typically begin with abrupt, severe agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the inability to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value 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 documented across 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 attributed the disease to an evil spirit who afflicted his victims' heads.

Historical healing records propose bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent specialists in diagnosing the disorder explain this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and observed 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 pain, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief bouts with infrequent attacks are managed with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a