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It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain erupted behind my right eye. Then came rapid shocks, like lightning bolts. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks usually start with abrupt, severe pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of extended symptom-free periods.

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

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties 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 throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing texts suggest unusual remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading experts in treating the condition note this.

In 1998, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode eased.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with infrequent episodes are handled with abortive therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a