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It was a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain bloomed behind my right eye. It was followed by quick jolts, like electric shocks. As each class progressed, the discomfort eased and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating pain focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate 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 described throughout 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 malevolent spirit who attacked his victims' heads.

Ancient medical texts propose unusual remedies for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short cycles with occasional episodes are handled with abortive therapy alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a