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It began on a gloomy Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain sprang behind my one eye. This was followed by quick shocks, similar to electric shocks. As each class came and went, the pain subsided and then came back with greater force. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe pain behind one eye that lasts for three hours.

About one in 1,000 people suffer by the condition, and males are more often diagnosed. Cluster headaches usually start with abrupt, severe pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the number fell to 4% 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 hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Support finally came from her parent and then from her husband, 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 dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning 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 earliest 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 malevolent entity who attacked his victims' heads.

Historical healing texts propose bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most 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 dental professionals misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are handled with abortive treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a