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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. Then came quick stabs, similar to electric shocks. As each class came and went, the discomfort eased and then returned with greater force. Multiple times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

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

This condition typically start with intense discomfort around one eye that persists up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks usually begin with abrupt, severe pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks 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 childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, 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 obtaining 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 first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical texts propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Leading specialists in treating the condition note this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the attack passed.

National guidance on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But leading specialists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a