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It was a dreary Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden pain sprang behind my right eye. Then came rapid jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort around a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating pain around 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 several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support 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 hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical medical records propose bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent specialists in treating the condition explain this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes 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 attack in 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are managed with acute treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a