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It was a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe discomfort around a single eye that lasts for three hours.

About one in 1,000 people suffer by the condition, and males are more often affected. Cluster headaches typically start with abrupt, severe agony focused on a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the failure to plan life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children 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 recalls 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 first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records propose bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

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

The disorder were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with occasional episodes are managed with acute treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a