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It was a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my right eye. This was followed by rapid stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain behind a single eye that persists up to several hours.

About one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches usually start with sudden, excruciating pain focused on one eye that reaches its peak within a short time and lasts for as long as 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 an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally classified by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with occasional episodes are handled with acute treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a