Unbearable Pain: My Fight Against the Enigmatic Pain of Cluster Headache Syndrome
It was a gloomy Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. It was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the pain subsided and then came back with increased force. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.
The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with severe discomfort behind one eye that persists for several hours.
Approximately one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.
What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often mistook her episodes as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.
Still, the failure to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.
Ancient medical records propose bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk remedies.
It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.
The disorder were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent specialists in treating the condition explain this.
In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.
Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack passed.
Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.
But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are managed with abortive therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The national guidelines need revising to reflect a
