Excruciating Suffering: My Battle Against the Enigmatic Suffering of Cluster Headaches
It was a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my right eye. It was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the pain subsided and then came back with greater force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.
The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with intense discomfort behind one eye that persists for several hours.
Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks typically start with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the lack of extended pain-free periods.
What unites patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her family often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.
Still, the failure to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.
Historical medical texts propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.
Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Leading experts in diagnosing the condition explain this.
In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.
Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack eased.
National guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.
But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short cycles with occasional attacks are handled with abortive treatment alone. Longer or more intense 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 guidance need updating to reflect a
