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It began on a gloomy Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain bloomed behind my one eye. This was followed by quick jolts, similar to electric shocks. As each class progressed, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort behind one eye that persists for three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm during bouts; the number fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After drinking alcohol 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 father 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 hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical medical records propose bizarre treatments for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short bouts with infrequent episodes are handled with acute treatment only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidance need revising to reflect a