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It was a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation sprang behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-on pain in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort around one eye that lasts for three hours.

About one in 1,000 people are affected by the condition, and men are more frequently affected. Attacks usually begin with abrupt, severe pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground 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, like many triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing records propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In 1998, researchers published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief cycles with infrequent attacks are managed with abortive therapy alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a