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It was a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation sprang behind my right eye. Then came rapid shocks, similar to lightning bolts. As each class progressed, the pain eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches typically begin with sudden, severe pain focused on a single eye that reaches its peak within a short time and continues 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, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around unpredictable pain 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 children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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

Ancient healing records suggest unusual treatments for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack passed.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known people.

But leading specialists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with occasional attacks are managed with acute treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a