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It was a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain bloomed behind my right eye. Then came quick jolts, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating pain around a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as drunken 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 took office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. 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 family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties 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 across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, 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 pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But consultant neurologists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with occasional episodes are managed with acute therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a