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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 intense pain bloomed behind my right eye. This was followed by quick shocks, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort behind one eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often diagnosed. Attacks usually begin with sudden, severe pain focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky 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 absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to plan life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from 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 episode inside a facility.

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Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical medical records suggest bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by global medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from 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 thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode passed.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading specialists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a