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It was a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. This was followed by quick stabs, like electric shocks. As the school day came and went, the pain subsided and then came back with greater force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-on pain in class by mid-morning. In late 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 one 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 abrupt, excruciating pain focused on one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest unusual treatments for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen treatment and medication until the attack passed.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short cycles with occasional attacks are handled with acute therapy alone. Longer or more severe bouts 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 head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a