Full-Blown Agony: My Battle With the Enigmatic Pain of Cluster Headaches
It was a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. This was followed by rapid stabs, like electric shocks. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.
The headaches returned frequently that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with severe discomfort behind a single eye that persists for three hours.
About one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with sudden, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.
What unites patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.
Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her family often interpreted her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.
Nevertheless, the failure to plan life around erratic attacks took its effect. She especially 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 small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.
Ancient healing texts suggest unusual treatments for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more folk cures.
It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.
The disorder were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Leading experts in diagnosing the condition note this.
In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a physician researched his symptoms.
Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough 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 redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.
Official guidelines on management advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known people.
But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy 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 cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.
The national guidelines need updating to reflect a
