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It was a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Leading experts in treating the disorder explain this.

In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major journal, 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, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one 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 treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced 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 pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a