Unbearable Suffering: A Personal Battle Against the Enigmatic Suffering of Cluster Headache Syndrome
It began on a overcast Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. It was followed by quick stabs, similar to electric shocks. As each class came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.
The headaches appeared repeatedly that autumn, and once more in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often begin with severe discomfort around a single eye that persists for several hours.
About one in 1,000 people suffer by the condition, and males are more frequently affected. Cluster headaches usually begin with sudden, excruciating agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the lack of long pain-free periods.
What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several triggers, 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 episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the failure to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.
Ancient healing texts propose unusual treatments for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.
It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.
Cluster headaches were only officially recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading specialists in diagnosing the disorder note this.
In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed activation 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 advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.
Specialists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate therapies.
A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and medication until the attack passed.
National guidance on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of well-known individuals.
But leading specialists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short bouts with occasional episodes are managed with acute treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.
The national guidance need updating to reflect a
