It began on a overcast Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.
The headaches returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with intense discomfort around one eye that lasts for three hours.
About 1 in 1000 people are affected by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, severe pain around a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of long pain-free periods.
What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, 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 condition worsened through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist hospital.
Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical texts propose unusual remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments including bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.
The disorder were only officially classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Leading specialists in diagnosing the disorder note this.
In 1998, researchers released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a physician looked up his symptoms.
Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the episode eased.
Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.
But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short cycles with infrequent attacks are managed with abortive therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve activity.
The national guidelines need updating to reflect a
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