Excruciating Pain: My Battle With the Puzzling Suffering of Cluster Headache Syndrome
It was a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain sprang behind my right eye. This was followed by quick stabs, similar to lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The attacks appeared repeatedly that autumn, and again 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 morning, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically begin with severe discomfort behind one eye that persists for several hours.
Approximately one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.
What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.
Nevertheless, the inability to plan life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an evil entity who attacked his victims' heads.
Ancient healing records propose unusual treatments for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies including bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.
The disorder were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.
In 1998, researchers released the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, 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.
In spite of such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.
Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some people.
But consultant specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Short cycles with infrequent episodes are managed with acute therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.
The national guidance need updating to reflect a
