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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation bloomed behind my one eye. This was followed by rapid shocks, similar to electric shocks. As each class progressed, the discomfort subsided and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe discomfort behind one eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks typically begin with abrupt, excruciating pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. 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 symptoms worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst 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 portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient healing texts suggest bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch 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 happening and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Leading experts in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief cycles with infrequent episodes are managed with abortive treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a