Excruciating Agony: My Battle Against the Mysterious Suffering of Cluster Headache Syndrome
It began on a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my right eye. Then came rapid jolts, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.
The attacks appeared frequently that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically start with severe discomfort around a single eye that persists up to several hours.
Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically start with sudden, severe pain around a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.
What unites patients is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often mistook her episodes as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the failure to plan life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple 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 portable toilet.
Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.
Ancient healing texts propose bizarre remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.
It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.
The disorder were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the head. Leading experts in diagnosing the disorder note this.
In 1998, scientists released the findings of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.
Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode eased.
Official guidance on management advise that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.
But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Short bouts with occasional attacks are managed with acute treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.
The national guidelines need revising to reflect a
