Excruciating Agony: A Personal Struggle With the Enigmatic Suffering of Cluster Headache Syndrome
It was a gloomy weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation erupted behind my one eye. It was followed by quick jolts, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.
The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with severe discomfort behind one eye that persists up to three hours.
Approximately 1 in 1000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches usually begin with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of long pain-free periods.
What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Still, the inability to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.
Ancient healing texts suggest bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only officially recognised by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the head. Leading experts in treating the disorder note this.
In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.
A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a calm volunteer talked them through oxygen therapy and medication until the attack passed.
National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known people.
But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief cycles with infrequent attacks are handled with abortive treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.
The national guidance need revising to reflect a
