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It was a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe pain around one eye that persists up to several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with abrupt, severe agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what some observers would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 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 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the attack passed.

National guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant specialists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Brief cycles with occasional attacks are handled with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a