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It was 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 sharp pain erupted behind my right eye. This was followed by rapid shocks, like electric shocks. As the school day progressed, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe pain around one eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Attacks typically begin with abrupt, severe pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate 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.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Understanding finally 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 office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the failure to plan life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value 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 history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts propose bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short bouts with infrequent attacks are handled with acute therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a