Unbearable Suffering: My Battle With the Mysterious Pain of Cluster Headaches
It was a overcast weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation sprang behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the pain eased and then returned with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.
The attacks appeared repeatedly that autumn, and again in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.
This condition often start with severe pain behind a single eye that persists up to three hours.
Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Cluster headaches typically start with sudden, severe agony around one eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, defined by the lack of extended pain-free periods.
What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her attacks as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the inability to organize life around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Ancient healing texts propose unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Leading experts in treating the disorder explain this.
In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
Despite such advances, identification 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 sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a physician looked up his complaints.
Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode passed.
Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of some people.
But consultant neurologists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with occasional attacks are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The official guidance need revising to reflect a
