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It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. This was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, 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 staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain around one eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches typically begin with sudden, severe pain around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties 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 history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Ancient healing records propose bizarre remedies for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the episode passed.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some people.

But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a