Unbearable Suffering: A Personal Battle Against the Puzzling Suffering of Cluster Headache Syndrome
It was a gloomy weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense pain sprang behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class progressed, the pain subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.
The headaches returned repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically start with intense discomfort behind one eye that persists for three hours.
About 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding 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 episodes. Her breakthrough diagnosis came in 2002 at a national hospital.
Nevertheless, the inability to plan daily activities around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms 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 facility.
Headaches have been described across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.
Historical medical texts suggest unusual treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk cures.
It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.
Cluster headaches were only officially classified by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent experts in treating the condition note this.
In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a doctor researched his complaints.
Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack eased.
Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some individuals.
But consultant specialists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief bouts with infrequent attacks are handled with abortive therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.
The national guidelines need updating to reflect a
