Full-Blown Suffering: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome
It was a dreary weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. This was followed by rapid jolts, like electric shocks. As the school day came and went, the discomfort eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.
The attacks appeared frequently that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with intense discomfort behind a single eye that lasts for three hours.
About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have chronic attacks, defined by the lack of extended pain-free periods.
What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number fell to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, 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 spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Nevertheless, the inability to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.
Ancient medical texts propose unusual remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.
It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading experts in diagnosing the condition note this.
In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a physician looked up his complaints.
Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm volunteer talked me through oxygen therapy and medication until the episode eased.
National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.
But consultant specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.
The official guidance need updating to reflect a
