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It began on a overcast Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. It was followed by rapid shocks, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks typically begin with abrupt, excruciating pain around a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw 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 causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable 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 simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an evil entity who afflicted his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

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

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable 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 attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen therapy and medication until the attack eased.

National guidance on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Short cycles with infrequent attacks are handled with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a