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It was a dreary weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. Then came quick jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then returned with greater intensity. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe discomfort around a single eye that persists up to three hours.

Approximately 1 in 1000 people suffer by the condition, and men are more often diagnosed. Attacks typically begin with abrupt, excruciating pain around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical texts propose unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

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

The disorder were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. 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 helpline during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant specialists believe the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short bouts with occasional attacks are managed with abortive therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidance need updating to reflect a