Excruciating Agony: A Personal Battle With the Enigmatic Pain of Cluster Headache Syndrome
It was a dreary Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation bloomed behind my right eye. It was followed by rapid shocks, similar to electric shocks. As each class progressed, the pain eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches often start with intense pain behind a single eye that lasts up to several hours.
About 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches usually begin with abrupt, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; some patients have continuous attacks, characterized by the absence of extended pain-free periods.
What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.
Her family often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.
Still, the failure to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs 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 attack inside a facility.
Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.
Ancient healing records propose unusual treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more folk remedies.
It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only officially recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent experts in treating the condition explain this.
In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, 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. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, 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 exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack eased.
National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some people.
But leading specialists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are handled with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired 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 decreases nerve activity.
The national guidance need updating to reflect a