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It began on a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden pain bloomed behind my right eye. This was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain around one eye that lasts for three hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Attacks typically begin with abrupt, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis 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 portable toilet.

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Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Historical medical texts suggest unusual remedies for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode eased.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a