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It was a gloomy Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. Then came quick stabs, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then returned with increased force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense pain around a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often affected. Cluster headaches usually start with abrupt, severe agony around one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; others have chronic attacks, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes 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 found office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

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

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief cycles with occasional episodes are handled with acute therapy only. More prolonged 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 procedure into the side of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a