Excruciating Suffering: My Battle With the Enigmatic Suffering of Cluster Headache Syndrome
It began on a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. This was followed by rapid jolts, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.
The attacks appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with severe pain behind a single eye that lasts for several hours.
About one in 1,000 people are affected by the disorder, and males are more often affected. Cluster headaches usually start with sudden, severe pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.
What connects patients is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a national hospital.
Nevertheless, the failure to plan life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.
Ancient healing records propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.
The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent 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 brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a physician researched his symptoms.
Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.
National guidance on management advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of well-known people.
But leading neurologists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short bouts with occasional episodes are managed with abortive treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.
The national guidance need revising to reflect a