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It began on a overcast weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain sprang behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe discomfort behind a single eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the condition, and males are more often affected. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, 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 occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation 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 obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts propose bizarre remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent 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 observed the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known people.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief cycles with occasional attacks are managed with acute therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a