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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain erupted behind my right eye. This was followed by quick stabs, reminiscent of lightning bolts. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned 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 morning, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically begin with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, 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, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Still, the failure to plan life around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after 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 significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.

Historical medical texts propose unusual treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, 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 global medical committees 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 blood vessel that delivers blood to the head. Leading experts in treating the condition note this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a calm advisor guided them through oxygen treatment and medication until the episode passed.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short cycles with infrequent episodes are managed with abortive treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.

The official guidance need updating to reflect a