Unbearable Pain: A Personal Struggle With the Mysterious Suffering of Cluster Headache Syndrome
It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my one eye. It was followed by rapid stabs, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.
The headaches appeared repeatedly that fall, and again in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with intense pain behind one eye that lasts up to several hours.
About one in 1,000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain around a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of extended pain-free periods.
What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several 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, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the failure to organize life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate 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 documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.
Ancient medical records suggest unusual treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.
It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.
The disorder were only officially recognised by global medical committees in 1988. 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 experts in treating the condition note this.
In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such advances, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode passed.
Official guidance on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of some people.
But consultant specialists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short cycles with infrequent episodes are handled with abortive therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve signals.
The national guidance need updating to reflect a
