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It was a overcast Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my one eye. Then came quick jolts, like electric shocks. As the school day came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort behind a single eye that lasts up to three hours.

About one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; others have chronic attacks, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure fell 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 started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis 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 remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical records propose unusual remedies for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the brain. Leading experts in diagnosing the condition note this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how much time? 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 dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode passed.

Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of some people.

But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a