Unbearable Suffering: My Battle With the Puzzling Pain of Cluster Headaches
It began on a overcast weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp pain bloomed behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then returned with increased force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.
The attacks returned frequently that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-blown pain in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically start with severe discomfort behind a single eye that persists up to several hours.
Approximately one in 1,000 people are affected by the disorder, and men are more frequently affected. Attacks typically begin with sudden, severe agony around one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, defined by the lack of long pain-free periods.
What unites patients is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.
Val Hobbs, 74, a chronic sufferer 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 attributed to being a difficult child,” she says. Her condition worsened 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 bus home.
Her relatives often mistook her attacks as drunken episodes. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the inability to plan life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms 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 described across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.
Historical medical texts propose unusual treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.
The disorder were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.
In 1998, researchers published the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.
Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has suffered from 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 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.
National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of some individuals.
But leading specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Short cycles with infrequent episodes are managed with abortive therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.
The official guidance need revising to reflect a
