Excruciating Agony: My Fight Against the Mysterious Pain of Cluster Headache Syndrome
It began on a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation erupted behind my right eye. This was followed by rapid stabs, similar to lightning bolts. As the school day progressed, the pain eased and then returned with increased force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.
The attacks appeared frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on agony in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with intense discomfort around one eye that lasts for three hours.
Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches typically start with sudden, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; others have chronic attacks, characterized by the absence of long symptom-free periods.
What unites patients is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.
One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.
Still, the failure to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value 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 earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an evil entity who afflicted his victims' heads.
Historical healing texts suggest unusual treatments for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only formally recognised by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent experts in treating the condition note this.
In the late 1990s, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is in charge 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 started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a physician researched his complaints.
Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm advisor talked them through oxygen treatment and drugs until the episode passed.
Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.
But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief bouts with occasional attacks are handled with acute treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve activity.
The official guidelines need revising to reflect a
