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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. This was followed by quick stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with increased force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain behind one eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, severe agony around one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, characterized by the absence of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records suggest unusual treatments for what some observers would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

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

The disorder were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Leading experts in treating the condition note this.

In 1998, scientists released the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes 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 attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Short cycles with infrequent attacks are managed with abortive treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired 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 decreases nerve activity.

The national guidelines need revising to reflect a