Excruciating Pain: My Battle Against the Puzzling Pain of Cluster Headache Syndrome
It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp pain bloomed behind my right eye. This was followed by quick shocks, like lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.
The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.
This condition often begin with intense discomfort behind one eye that lasts for several hours.
Approximately one in 1,000 people are affected by the condition, and men are more often diagnosed. Cluster headaches usually begin with abrupt, severe pain around one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of extended pain-free periods.
What unites sufferers is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.
Still, the inability to plan life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.
Ancient healing records suggest unusual remedies for what some experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.
Cluster headaches were only formally classified by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent experts in diagnosing the condition explain this.
In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode eased.
National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.
But leading neurologists argue the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent episodes are handled with acute therapy alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.
The official guidelines need updating to reflect a
