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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation bloomed behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then returned with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense pain around one eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Cluster headaches typically start with abrupt, excruciating pain around a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in periodic bouts; others have chronic attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize life around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Ancient medical records propose unusual treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

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

The disorder were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack eased.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are managed with abortive therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a