Full-Blown Agony: My Struggle Against the Mysterious Pain of Cluster Headache Syndrome
It was a overcast Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation sprang behind my one eye. It was followed by rapid stabs, like lightning bolts. As the school day progressed, the pain eased and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.
The headaches returned repeatedly that fall, and once more in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with severe pain around a single eye that persists up to several hours.
Approximately one in 1,000 people suffer by the disorder, and males are more frequently affected. Cluster headaches usually begin with sudden, excruciating pain around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have continuous attacks, characterized by the lack of long symptom-free periods.
What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.
One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.
Still, the failure to organize life around unpredictable attacks 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 looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.
Historical medical texts propose unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.
It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only officially recognised by international headache societies in 1988. 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 brain. Leading specialists in treating the condition explain this.
In 1998, researchers released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: 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 tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, 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 adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.
National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known individuals.
But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout determines the approach.” Short bouts with occasional episodes are handled with abortive therapy only. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.
The official guidelines need updating to reflect a
