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

It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation bloomed behind my one eye. This was followed by quick jolts, similar to lightning bolts. As the school day progressed, the discomfort eased and then returned with increased intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort around a single eye that lasts for several hours.

About 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks typically start with abrupt, severe pain around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding finally 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 concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable 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 small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing records propose unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some individuals.

But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent attacks are managed with abortive therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a