Unbearable Suffering: My Struggle With the Enigmatic Pain of Cluster Headache Syndrome
It was a gloomy Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my right eye. This was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.
The attacks returned frequently that autumn, and once more in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often start with intense discomfort around a single eye that persists up to several hours.
About 1 in 1000 people are affected by the condition, and males are more often affected. Cluster headaches typically begin with sudden, excruciating pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.
What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.
One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her family often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the failure to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms 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 throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.
Ancient healing records propose bizarre treatments for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.
It was a European physician who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific 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 problem with a key blood vessel which delivers blood to the head. Prominent specialists in diagnosing the disorder note this.
In 1998, researchers published the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.
Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. 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 cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack eased.
National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some individuals.
But leading neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are managed with abortive therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.
The national guidelines need updating to reflect a
