Unbearable Agony: My Battle Against the Enigmatic Suffering of Cluster Headache Syndrome
It began on a dreary Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain erupted behind my right eye. It was followed by quick shocks, like electric shocks. As the school day progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.
The headaches returned frequently that fall, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often start with severe discomfort behind one eye that persists for several hours.
About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks typically begin with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.
What connects patients is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.
Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.
Still, the inability to organize life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.
Historical medical texts propose bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.
It was a Dutch doctor who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.
Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Leading experts in treating the condition explain this.
In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.
Neurologists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.
Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of some people.
But leading neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with abortive therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.
The national guidelines need revising to reflect a
