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It was a overcast Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain sprang behind my right eye. Then came rapid jolts, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain around one eye that lasts for several hours.

About one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with abrupt, severe pain around a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have chronic attacks, characterized by the absence of extended pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began 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. Drinking in her adolescence, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

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

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Leading specialists in treating the condition note this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. 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 reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, 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 experienced cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer talked them through oxygen treatment and drugs until the episode passed.

Official guidelines on management advise 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. Preventive options include verapamil, which apparently helps manage the bouts of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief bouts with infrequent attacks are handled with acute therapy only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a