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It was a overcast Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain erupted behind my one eye. Then came quick stabs, like lightning bolts. As each class progressed, the pain 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 paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind a single eye that lasts up to several hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms 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 described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Historical medical records propose unusual treatments for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only officially classified by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom 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 tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode passed.

National guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some individuals.

But leading neurologists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with occasional episodes are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a