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It was a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp sensation erupted behind my one eye. Then came quick shocks, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with greater intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe pain around one eye that persists for several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe agony around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic cycles; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient medical records propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor 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 happening and disappearing each day at specific hours”.

Cluster headaches were only officially classified by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant specialists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short cycles with occasional episodes are handled with abortive treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a