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It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a intense sensation erupted behind my right eye. Then came rapid stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then returned with greater 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 took aspirin, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense pain behind a single eye that persists for three hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently affected. Attacks usually begin with abrupt, severe pain focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Ancient healing records suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only officially classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer guided them through oxygen treatment and medication until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant specialists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are managed with abortive therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a