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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 class, when a sudden sensation erupted behind my right eye. Then came quick jolts, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that fall, and again in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe pain behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches usually begin with sudden, severe pain around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around erratic pain took its effect. She particularly 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 worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical healing texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.

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

The disorder were only officially recognised by international headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists released the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood 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. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode eased.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Brief bouts with occasional attacks are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many 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 activity.

The official guidance need revising to reflect a