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It began on a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain bloomed behind my right eye. Then came quick stabs, similar to electric shocks. As the school day came and went, the pain eased and then returned with increased force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges 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.

This condition often begin with intense discomfort around a single eye that persists for several hours.

About one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks usually start with sudden, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the lack of long pain-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, 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 liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical records suggest bizarre treatments for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. 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 experienced 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 teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack eased.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Short cycles with infrequent attacks are handled with abortive treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many 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 signals.

The national guidance need updating to reflect a