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It was a dreary Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. It was followed by rapid jolts, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

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

Approximately 1 in 1000 individuals suffer by the condition, and males are more often affected. Cluster headaches usually start with sudden, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, 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 a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many triggers, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, 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 robs you of the simple liberties 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 facility.

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Headaches have been described across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Ancient healing records suggest unusual treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Leading experts in treating the condition explain this.

In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack passed.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a