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It began on a dreary Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden pain erupted behind my right eye. This was followed by quick shocks, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then returned with greater force. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and again in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

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

About 1 in 1000 people are affected by the condition, and men are more often diagnosed. Cluster headaches typically begin with sudden, severe agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some people.

But leading neurologists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are handled with abortive therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a