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It began on a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain bloomed behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-on pain in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort around a single eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches usually start with abrupt, severe pain around one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an evil entity who afflicted his victims' heads.

Ancient medical records propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s 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 physician looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are managed with acute treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a