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It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my right eye. It was followed by rapid shocks, like lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort around one eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches typically start with sudden, severe pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, characterized by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer 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 condition worsened through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated 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 relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the failure to plan daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing records propose unusual treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen treatment and medication until the attack eased.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some people.

But leading neurologists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short cycles with infrequent episodes are managed with acute treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a