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It was a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. This was followed by quick stabs, like lightning bolts. As each class progressed, the pain subsided and then came back with increased force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind one eye that persists for several hours.

About one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically start 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, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate 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, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to plan life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a physician researched his complaints.

Specialists 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 works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode passed.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Brief bouts with occasional attacks are handled with abortive therapy alone. More prolonged or more intense bouts require preventives 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 side of the head where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a