Unbearable Agony: My Battle Against the Enigmatic Suffering of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. Then came rapid shocks, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.
The headaches returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically begin with intense discomfort around one eye that persists up to several hours.
About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating agony around one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the lack of long pain-free periods.
What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.
Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a national neurology center.
Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described throughout the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.
Historical healing texts suggest unusual treatments for what some observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.
It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.
The disorder were only formally classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Leading experts in diagnosing the condition explain this.
In 1998, scientists released the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a physician researched his symptoms.
Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which side do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.
National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.
But consultant neurologists believe the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Short bouts with occasional attacks are handled with acute treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.
The national guidance need updating to reflect a
