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It was a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain sprang behind my one eye. It was followed by quick shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater 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 agony remained unbearable.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort around one eye that persists for several hours.

About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, 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 robs 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 facility.

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Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical medical records suggest unusual treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which supplies 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 triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of some individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short cycles with occasional attacks are managed with abortive treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a