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It began on a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation sprang behind my one eye. It was followed by rapid shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned frequently that autumn, and again in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort around a single eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Attacks typically start with sudden, excruciating pain around a single eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Ancient healing texts propose bizarre treatments for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack eased.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with abortive therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidance need updating to reflect a