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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain erupted behind my one eye. This was followed by rapid shocks, like electric shocks. As the school day came and went, the pain eased and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon establishing an annual cycle. September and October were the most severe, 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 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe pain around a single eye that persists up to several hours.

About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Support 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 clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a national hospital.

Still, the inability to plan life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst 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 significant concert, only to have an episode inside a facility.

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

Ancient healing records propose bizarre treatments for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer talked them through oxygen therapy and medication until the attack passed.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short bouts with occasional episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a