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It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. Then came quick stabs, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind one eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with abrupt, severe pain around one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Still, the inability to organize life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, 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 liberties we don't value until they're gone,” she says. She recalls obtaining 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 account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.

Historical medical records suggest bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession 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 volunteer talked them through oxygen treatment and medication until the episode passed.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading specialists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with infrequent episodes are handled with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a