Unbearable Pain: My Battle With the Puzzling Pain of Cluster Headaches
It began on a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.
The attacks returned repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with severe pain behind a single eye that lasts for several hours.
About one in 1,000 people are affected by the condition, and men are more frequently affected. Attacks usually begin with sudden, excruciating pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.
What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.
One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.
Still, the inability to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, 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 small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.
Historical healing records suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.
Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Leading specialists in treating the condition note this.
In 1998, researchers released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, 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.
Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in recently, after a doctor looked up his complaints.
Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What season? 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 clinics. But many first go to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the attack passed.
National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.
But leading specialists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Short cycles with occasional attacks are managed with abortive treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.
The official guidelines need revising to reflect a
