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It was a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation sprang behind my right eye. Then came quick jolts, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain around one eye that persists up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more often affected. Cluster headaches typically begin with abrupt, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually 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 clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing records propose unusual treatments for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally classified by global headache committees 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 blood vessel which delivers blood to the brain. Leading experts in treating the condition explain this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant specialists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a