Full-Blown Suffering: My Battle Against the Puzzling Pain of Cluster Headaches
It was a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. Then came rapid jolts, like lightning bolts. As each class progressed, the discomfort eased and then returned with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.
The headaches appeared frequently that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often begin with severe pain around one eye that lasts for several hours.
About one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with sudden, severe pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What unites patients is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began 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 symptoms worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate 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 definitive diagnosis came in the early 2000s at a national neurology center.
Still, the inability to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms 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 facility.
Headaches have been documented across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who attacked his sufferers' heads.
Historical medical texts propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.
It was a European physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.
The disorder were only officially classified by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.
In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.
Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode eased.
Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known people.
But consultant specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.
The official guidelines need revising to reflect a
