Unbearable Agony: My Battle With the Puzzling Pain of Cluster Headaches
It began on a gloomy weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation erupted behind my one eye. Then came rapid shocks, like lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The headaches appeared repeatedly that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition often begin with intense pain behind one eye that lasts for several hours.
Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Attacks typically begin with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic cycles; others have chronic attacks, characterized by the lack of long pain-free periods.
What unites sufferers is the severity. One study rated the pain at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, 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 attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.
Still, the failure to organize life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.
Historical healing texts propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Leading specialists in diagnosing the disorder note this.
In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
Despite such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a physician researched his complaints.
Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor guided me through oxygen therapy and medication until the attack passed.
National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known people.
But leading neurologists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.
The national guidelines need updating to reflect a
