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It was a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain sprang behind my right eye. Then came rapid stabs, similar to electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe discomfort behind a single eye that lasts for several hours.

About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, severe pain focused on one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like many triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

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

Still, the failure to organize life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.

Historical healing texts suggest bizarre remedies for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches 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 artery which supplies blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

National guidelines on management advise that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some people.

But consultant specialists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are managed with abortive treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a