Full-Blown Agony: My Struggle Against the Enigmatic Pain of Cluster Headaches
It was a overcast weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense sensation erupted behind my one eye. Then came rapid jolts, like lightning bolts. As each class progressed, the pain eased and then came back with greater intensity. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.
The headaches returned repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with severe pain around a single eye that lasts up to three hours.
Approximately one in 1,000 people suffer by the condition, and men are more often affected. Cluster headaches typically begin with sudden, severe pain focused on a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic cycles; others have continuous attacks, characterized by the lack of long symptom-free periods.
What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the failure to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation 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 obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.
Ancient medical records propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.
It was a Dutch physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.
Cluster headaches were only formally classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading experts in treating the condition note this.
In 1998, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.
Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor guided me through oxygen treatment and medication until the attack eased.
National guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known people.
But consultant specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with infrequent episodes are handled with abortive therapy alone. More prolonged or more intense 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 updating to reflect a
