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It began on a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense pain around a single eye that lasts for several hours.

About 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Attacks typically start with abrupt, severe pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have chronic attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding 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 hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children 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 significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical records propose bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists 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, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the bouts of well-known individuals.

But consultant specialists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short bouts with infrequent episodes are handled with abortive therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a