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It began on a gloomy weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain sprang behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As each class came and went, the pain subsided and then returned with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort around one eye that lasts for three hours.

About 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Attacks usually start with abrupt, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, 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 condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an evil entity who afflicted his victims' heads.

Ancient medical texts suggest bizarre remedies for what some experts would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk remedies.

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

The disorder were only formally classified by global 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 major blood vessel that delivers blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with infrequent attacks are handled with acute therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a