Unbearable Pain: A Personal Battle Against the Mysterious Suffering of Cluster Headaches
It was a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. This was followed by quick jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.
The attacks returned repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with severe discomfort around a single eye that lasts up to several hours.
About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually begin with abrupt, severe agony around one eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.
What unites sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.
One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many triggers, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her father 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 fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.
Ancient medical texts propose unusual treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.
Cluster headaches were only officially recognised by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the disorder note this.
In 1998, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a physician looked up his complaints.
Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do signs 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 cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode passed.
Official guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.
But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short bouts with infrequent episodes are handled with abortive therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve activity.
The official guidance need revising to reflect a
