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It was a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. Then came quick stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain behind one eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, severe pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to plan life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable 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 episode inside a facility.

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Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical medical texts suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. 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 recognised by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But leading neurologists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short bouts with occasional episodes are handled with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a