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It was a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain behind one eye that persists for several hours.

About one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with sudden, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily 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 seasonal bouts; others have chronic attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the inability to organize life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe 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 episode inside a facility.

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Headaches have been documented across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil entity who attacked his victims' heads.

Historical healing texts suggest unusual treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially classified by global medical committees in the late 1980s. 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. Prominent specialists in treating the disorder explain this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition 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 dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the episode eased.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Short bouts with occasional attacks are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a