Excruciating Agony: My Struggle Against the Enigmatic Suffering of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. This was followed by rapid stabs, similar to electric shocks. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.
The headaches appeared repeatedly that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often begin with intense discomfort behind one eye that lasts for three hours.
About 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the absence of long pain-free periods.
What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely 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, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the failure to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs 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 episode inside a facility.
Headaches have been documented throughout the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.
Ancient medical texts suggest unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.
Cluster headaches were only officially classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading specialists in treating the condition explain this.
In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode eased.
National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known individuals.
But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.
The official guidelines need updating to reflect a
