Excruciating Suffering: My Battle With the Puzzling Pain of Cluster Headache Syndrome
It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense sensation erupted behind my right eye. This was followed by rapid stabs, like electric shocks. As the school day came and went, the pain eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.
The attacks appeared frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with severe discomfort around one eye that lasts up to several hours.
Approximately one in 1,000 people suffer by the condition, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.
What unites patients is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were not in pain.
Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.
Ancient medical records suggest unusual treatments for what some observers would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more folk remedies.
It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only formally classified by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent experts in treating the condition explain this.
In 1998, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.
Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode eased.
National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some individuals.
But consultant specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent attacks are handled with acute therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.
The national guidelines need revising to reflect a
