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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. This was followed by quick shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches returned frequently that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe pain behind a single eye that lasts for three hours.

About 1 in 1000 people are affected by the disorder, and males are more often affected. Attacks typically begin with sudden, excruciating pain around one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the failure to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.

Historical healing records suggest bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head 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 cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, 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 dentists misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and medication until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known people.

But leading neurologists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with occasional episodes are managed with abortive therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a