Unbearable Agony: My Battle With the Mysterious Suffering of Cluster Headaches
It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my one eye. This was followed by quick shocks, like lightning bolts. As each class came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.
The attacks returned repeatedly that fall, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
This condition often begin with intense discomfort around one eye that persists for three hours.
About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches usually begin with sudden, excruciating pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of long symptom-free periods.
What connects patients is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.
One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her family often mistook her attacks as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.
Still, the inability to plan daily activities around unpredictable attacks 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 paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.
Ancient healing records suggest unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.
It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.
Cluster headaches were only formally classified by global medical societies 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. Prominent specialists in treating the condition note this.
In 1998, scientists released the results 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 hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a physician researched his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted 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 Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode passed.
National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of well-known individuals.
But leading neurologists believe the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short bouts with occasional attacks are managed with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.
The national guidelines need revising to reflect a