Unbearable Pain: My Battle Against the Puzzling Pain of Cluster Headaches
It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with increased force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.
The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with intense pain behind a single eye that lasts for three hours.
About 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Cluster headaches typically begin with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.
What connects patients is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.
One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “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 time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the failure to organize daily activities around erratic attacks took its toll. 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 family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.
Ancient medical records suggest unusual remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.
It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.
Cluster headaches were only officially recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Leading experts in diagnosing the disorder explain this.
In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.
Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from 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 pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode eased.
National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of well-known individuals.
But consultant specialists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief bouts with occasional attacks are handled with abortive therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The national guidance need updating to reflect a
