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It was a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden pain sprang behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense pain around one eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and men are more often affected. Cluster headaches usually begin with abrupt, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several causes, 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 attacks as drunken behavior. Support eventually came from her father and then from her husband, Rod. “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 fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to plan life around unpredictable 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 looked after by her family during the incapacitation caused by the worst episodes. “It robs 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 episode inside a portable toilet.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing records suggest bizarre treatments for what some experts would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

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

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode passed.

National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Short cycles with infrequent attacks are handled with acute therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a