Unbearable Agony: My Battle With the Enigmatic Pain of Cluster Headache Syndrome
It began on a overcast Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden pain bloomed behind my right eye. This was followed by quick stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then returned with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.
The headaches appeared frequently that autumn, and once more in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically start with intense pain around one eye that persists up to three hours.
About 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches usually begin with abrupt, severe pain around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of extended pain-free periods.
What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.
One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her episodes as drunken episodes. 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 relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Still, the inability to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Ancient medical records propose bizarre treatments for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more folk cures.
It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.
Cluster headaches were only formally recognised by global medical societies 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 that supplies blood to the head. Leading experts in diagnosing the disorder explain this.
In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.
Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.
National guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some people.
But leading specialists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with acute therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.
The national guidance need revising to reflect a
