Unbearable Agony: A Personal Battle Against the Puzzling Pain of Cluster Headaches
It was a gloomy weekday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by quick stabs, like electric shocks. As the school day came and went, the discomfort subsided and then returned with greater force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.
The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.
This condition typically begin with severe pain around one eye that persists up to several hours.
About one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks usually start with sudden, severe agony around one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.
What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started 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 condition worsened through childhood. Drinking in her teens, like many causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.
Her family often interpreted her episodes as drunken episodes. Support eventually 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 time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.
Nevertheless, the failure to plan life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.
Ancient healing records suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.
The disorder were only officially recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent experts in diagnosing the disorder note this.
In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.
Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode passed.
National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some individuals.
But consultant specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are managed with abortive therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.
The national guidelines need revising to reflect a
