Unbearable Suffering: A Personal Fight With the Puzzling Suffering of Cluster Headache Syndrome
It began on a dreary weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain erupted behind my one eye. Then came quick jolts, like electric shocks. As the school day progressed, the pain eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.
The attacks returned frequently that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with intense discomfort around a single eye that lasts for three hours.
About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually start with sudden, severe pain around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What connects patients is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her family often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist neurology center.
Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties 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 portable toilet.
Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil entity who attacked his victims' heads.
Historical healing records suggest bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk cures.
It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.
Cluster headaches were only formally classified by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the head. Leading experts in treating the disorder explain this.
In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a physician researched his symptoms.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack eased.
Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some individuals.
But consultant specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief bouts with infrequent attacks are handled with acute treatment only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
