Excruciating Suffering: My Fight With the Puzzling Pain of Cluster Headaches
It began on a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain sprang behind my right eye. It was followed by rapid jolts, like lightning bolts. As each class progressed, the pain eased and then returned with increased force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.
The headaches appeared frequently that fall, and once more in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with severe pain behind one eye that lasts for three hours.
About 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with sudden, severe pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; others have continuous attacks, defined by the absence of extended pain-free periods.
What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.
One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began 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 her youth. Drinking in her teens, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the failure to organize life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.
Historical healing texts 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 superstitious cures.
It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.
The disorder were only formally recognised by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading experts in treating the condition explain this.
In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a doctor researched his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack passed.
Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some individuals.
But leading specialists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.
The national guidance need updating to reflect a