Unbearable Agony: My Battle With the Puzzling Pain of Cluster Headache Syndrome
It was a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden pain erupted behind my right eye. Then came rapid shocks, like electric shocks. As each class came and went, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.
The headaches returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on agony 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 headaches.
This condition often begin with severe discomfort behind one eye that lasts up to several hours.
Approximately one in 1,000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the lack of long symptom-free periods.
What unites patients is the severity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her family often interpreted her episodes as drunken episodes. Support 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 clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist 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 flaky as a colleague, and even having to be looked after by her children during the incapacitation 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 episode inside a portable toilet.
Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.
Ancient medical records propose unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a European physician who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only officially recognised by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Leading specialists in treating the disorder note this.
In 1998, researchers published the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor researched his complaints.
Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen treatment and medication until the episode passed.
National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known individuals.
But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are managed with acute therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.
The official guidance need revising to reflect a
