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It began on a overcast Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain erupted behind my right eye. Then came quick jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe pain around one eye that lasts up to three hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often affected. Attacks typically begin with sudden, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical healing texts propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk cures.

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

Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm advisor guided them through oxygen treatment and medication until the attack eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a