🔗 Share this article

It began on a dreary Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. It was followed by quick stabs, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense discomfort behind one eye that lasts for three hours.

About 1 in 1000 people suffer by the condition, and men are more frequently affected. Cluster headaches typically begin with abrupt, excruciating agony around one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. 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.

Nevertheless, the inability to plan life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient healing records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Prominent experts in treating the condition explain this.

In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. 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 support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode passed.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with occasional attacks are managed with abortive therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a