Unbearable Pain: A Personal Battle With the Puzzling Suffering of Cluster Headaches
It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation erupted behind my one eye. It was followed by quick stabs, like lightning bolts. As the school day progressed, the pain subsided and then returned with greater intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.
The attacks appeared repeatedly that fall, and once more in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically start with intense pain behind a single eye that lasts for three hours.
Approximately one in 1,000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.
What unites sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.
One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like several causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the failure to plan daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Historical healing texts propose bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.
The disorder were only formally classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.
In 1998, researchers released the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.
Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable therapies.
Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode eased.
Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.
But consultant specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief cycles with occasional attacks are managed with acute therapy only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.
The official guidance need revising to reflect a
