Excruciating Agony: My Fight Against the Puzzling Pain of Cluster Headaches
It was a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation bloomed behind my right eye. Then came quick shocks, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.
The headaches returned repeatedly that fall, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition often start with severe pain behind a single eye that lasts for several hours.
About one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually start with sudden, severe agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.
What unites patients is the severity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.
Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.
Historical healing records propose bizarre treatments for what modern observers would classify 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 “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Prominent specialists in diagnosing the condition note this.
In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.
Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack eased.
National guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known individuals.
But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are managed with acute therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
