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It was a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden pain bloomed behind my right eye. It was followed by quick jolts, like electric shocks. As the school day came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort behind a single eye that lasts for three hours.

About one in 1,000 individuals suffer by the disorder, and men are more often affected. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate 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, in part due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe 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 major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Historical medical texts suggest unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

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

Cluster headaches were only formally recognised by international medical 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 key blood vessel that delivers blood to the head. Leading experts in treating the condition explain this.

In 1998, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked me through oxygen therapy and medication until the episode eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are handled with acute treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a