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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain erupted behind my one eye. Then came quick stabs, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort behind one eye that persists up to several hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually begin with sudden, severe pain around a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually 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 relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small 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 documented throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. 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.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids 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 clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short cycles with occasional episodes are handled with acute treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a