Full-Blown Agony: My Battle With the Enigmatic Pain of Cluster Headaches
It was a gloomy weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense pain erupted behind my right eye. This was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with increased force. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.
The headaches appeared repeatedly that autumn, and again in the 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 twinges on the train, full-on agony in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically start with severe discomfort around a single eye that lasts for three hours.
Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches usually start with sudden, severe agony focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; others have chronic attacks, characterized by the absence of extended symptom-free periods.
What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.
One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her family often interpreted her episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.
Nevertheless, the failure to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.
Historical medical texts propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions 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 occurring and vanishing daily at fixed hours”.
The disorder were only officially classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder note this.
In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode eased.
National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some people.
But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief bouts with occasional attacks are managed with abortive therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
