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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. It was followed by rapid stabs, similar to electric shocks. As the school day progressed, the pain subsided and then came back with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Cluster headaches usually start with sudden, severe pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many causes, 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 mistook her episodes as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize daily activities around unpredictable 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 looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician 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”.

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks 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 discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent 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 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 dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode passed.

National guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading neurologists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Short bouts with infrequent episodes are handled with abortive therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a