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It was a overcast weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation erupted behind my one eye. This was followed by quick jolts, like electric shocks. As the school day progressed, the discomfort eased and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort around a single eye that persists for three hours.

About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches usually begin with sudden, excruciating pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a long-term 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 attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs 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 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 ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records propose unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive account of a cluster-type attack. 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 formally classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent experts in treating the disorder note this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge 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 symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer guided me through oxygen treatment and medication until the episode passed.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some people.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Short bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a