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It was a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain sprang behind my right eye. This was followed by quick jolts, like electric shocks. As each class progressed, the pain eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind a single eye that persists for three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks usually start with abrupt, excruciating pain around a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Historical healing texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.

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 intense headache happening and disappearing daily at fixed hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes 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 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of some people.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short cycles with infrequent episodes are handled with acute therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a