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It began on a overcast Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. This was followed by rapid stabs, like lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared 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: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense pain behind a single eye that persists up to three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, severe pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started 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 childhood. Alcohol in her adolescence, like several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms 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 portable toilet.

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Headaches have been documented across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical texts suggest unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by international medical 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 that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need greater 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 early 2021; a calm advisor guided me through oxygen therapy and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known people.

But leading specialists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a