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It was a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense sensation erupted behind my right eye. This was followed by quick shocks, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort behind one eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often affected. Attacks typically begin with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support 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 office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.

Historical medical texts suggest unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only officially recognised by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, 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 slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode eased.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with acute therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a