🔗 Share this article

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 pain erupted behind my one eye. This was followed by quick stabs, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with greater force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, 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 headache disorder.

This condition typically begin with severe pain around a single eye that persists for several hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently affected. Attacks typically start with abrupt, excruciating pain around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Ancient medical texts suggest unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a European 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 happening and vanishing each day at specific hours”.

The disorder were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short bouts with infrequent episodes are managed with abortive therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a