Excruciating Suffering: A Personal Fight With the Puzzling Pain of Cluster Headaches
It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my right eye. Then came quick jolts, similar to lightning bolts. As the school day came and went, the pain eased and then came back with greater force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.
The attacks returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.
This condition typically start with severe pain around a single eye that persists for several hours.
About 1 in 1000 individuals are affected by the disorder, and males are more often affected. Attacks typically start with abrupt, 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 multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, defined by the absence of long pain-free periods.
What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Still, the inability to plan life around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who afflicted his victims' heads.
Ancient healing records suggest bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.
It was a European physician who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.
The disorder were only formally classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Leading experts in treating the disorder explain this.
In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such advances, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a physician looked up his symptoms.
Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.
Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, 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 general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are handled with acute therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.
The national guidelines need updating to reflect a
