Unbearable Agony: A Personal Battle With the Enigmatic Suffering of Cluster Headache Syndrome

It was a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. This was followed by quick jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain behind one eye that lasts up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Attacks typically begin with sudden, severe pain focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the inability to plan life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical records suggest bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent experts in treating the disorder note this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. 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 early 2021; a calm volunteer talked me through oxygen treatment and medication until the episode passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are managed with abortive treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a