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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by rapid shocks, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches returned frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain around a single eye that persists up to several hours.

About one in 1,000 people are affected by the disorder, and men are more often affected. Cluster headaches usually begin with sudden, severe agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to organize life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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

Ancient medical texts suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only officially classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, 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, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches 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 teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the attack eased.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of some individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are handled with acute treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a