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It was a gloomy Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation sprang behind my one eye. Then came rapid stabs, similar to lightning bolts. As each class progressed, the pain eased and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe discomfort behind one eye that persists for three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently affected. Attacks typically start with sudden, severe agony around one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes 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 deteriorated through childhood. Alcohol in her teens, like many causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts propose bizarre remedies for what some observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are handled with acute therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidance need revising to reflect a