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It was a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation sprang behind my right eye. Then came rapid shocks, like electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense pain around one eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently affected. Attacks typically begin with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Historical medical records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. 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 officially recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading specialists in diagnosing the disorder note this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists 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 reassuring volunteer guided them through oxygen treatment and drugs until the attack eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with acute therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a