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It began on a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. Then came quick jolts, like electric shocks. As each class came and went, the discomfort eased and then returned with increased force. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain around a single eye that lasts for several hours.

About 1 in 1000 people suffer by the condition, and males are more often affected. Cluster headaches usually start with abrupt, severe pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; others have continuous attacks, characterized by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated 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 remembers winning tickets for a significant concert, only to have an attack inside a facility.

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

Historical medical texts propose unusual treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen therapy and medication until the attack passed.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some people.

But leading 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 everything: “The duration of the cycle determines the treatment.” Short cycles with occasional episodes are managed with abortive therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a