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It was a dreary Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. This was followed by rapid shocks, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with increased force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon forming an annual pattern. 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-on pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense discomfort around a single eye that lasts up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches typically start with abrupt, severe agony around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; others have continuous attacks, defined by the lack of long pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. She particularly 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 most severe episodes. “It robs 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 attack inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records propose bizarre remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Prominent specialists in treating the condition note this.

In 1998, scientists released the findings 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 prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate 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 attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Short cycles with infrequent attacks are handled with acute treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a