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It was a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation sprang behind my right eye. Then came quick shocks, reminiscent of electric shocks. As each class progressed, the pain subsided and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in 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 shower, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Cluster headaches usually begin with abrupt, severe pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis 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 significant concert, only to have an episode inside a facility.

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

Ancient healing texts propose bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some people.

But leading specialists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with infrequent episodes are managed with abortive treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a