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It was a gloomy Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain erupted behind my one eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe discomfort behind a single eye that lasts up to several hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started 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 symptoms worsened through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing texts propose bizarre remedies for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode eased.

National guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Short cycles with infrequent attacks are managed with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a