Excruciating Pain: My Battle Against the Puzzling Suffering of Cluster Headaches
It was a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense sensation erupted behind my one eye. Then came quick jolts, reminiscent of lightning bolts. As each class came and went, the pain subsided and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.
The attacks appeared frequently that autumn, 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 pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with severe discomfort behind one eye that lasts for several hours.
About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, severe pain around one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.
What connects patients is the severity. One study scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her family often mistook her attacks as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.
Still, the failure to plan daily activities around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.
Ancient healing records suggest unusual remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.
It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.
The disorder were only officially recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder explain this.
In the late 1990s, researchers released the findings of a research project 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 activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
Despite such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.
A charity trustee, 78, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. 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 volunteer talked them through oxygen therapy and medication until the episode eased.
Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of some people.
But leading specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with infrequent episodes are handled with acute therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.
The official guidelines need updating to reflect a
