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It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. Then came rapid jolts, like electric shocks. As each class progressed, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense discomfort behind a single eye that persists for three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often affected. Cluster headaches typically begin with abrupt, severe agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated 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 found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis 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 winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical medical records propose unusual remedies for what some experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of some people.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Short cycles with occasional episodes are handled with acute treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a