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It began on a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my right eye. This was followed by rapid stabs, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense pain behind a single eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently affected. Attacks usually start with sudden, excruciating agony around one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like 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 relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the failure to plan life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, 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 appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical texts propose bizarre remedies for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

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

Cluster headaches were only formally recognised by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode passed.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief bouts with infrequent episodes are managed with acute therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, 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 decreases nerve activity.

The official guidance need updating to reflect a