Excruciating Suffering: My Battle Against the Mysterious Pain of Cluster Headaches
It was a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation sprang behind my right eye. It was followed by quick shocks, like electric shocks. As each class came and went, the discomfort subsided and then came back 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 paracetamol, but the agony remained unrelenting.
The attacks returned repeatedly that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often start with intense pain around one eye that persists up to several hours.
About 1 in 1000 people are affected by the disorder, and males are more frequently affected. Attacks typically begin with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of long pain-free periods.
What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.
One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.
Still, the inability to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, 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 episode inside a facility.
Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.
Ancient healing texts propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments including bloodletting to other, more folk cures.
It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only formally classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the head. Leading experts in diagnosing the disorder note this.
In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: 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 tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the episode eased.
Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known people.
But consultant specialists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short bouts with infrequent episodes are handled with abortive therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The official guidelines need revising to reflect a
