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It was a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. This was followed by quick jolts, like electric shocks. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort around a single eye that persists up to several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began 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 adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.

Historical medical records propose unusual treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading specialists in treating the disorder explain this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode passed.

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

But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are managed with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a