Full-Blown Suffering: My Battle With the Puzzling Pain of Cluster Headache Syndrome
It began on a dreary weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation erupted behind my right eye. It was followed by quick stabs, similar to electric shocks. As the school day came and went, the pain eased and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.
The headaches appeared frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with intense discomfort behind one eye that lasts up to three hours.
Approximately 1 in 1000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches typically begin with sudden, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, 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, more severe than broken bones or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.
Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.
Still, the inability to plan life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, 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 appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.
Ancient healing records propose unusual remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only officially recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading experts in diagnosing the disorder note this.
In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
In spite of such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician researched his symptoms.
Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate therapies.
A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.
National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of some people.
But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief bouts with occasional episodes are managed with abortive therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
