Unbearable Agony: A Personal Struggle Against the Puzzling Pain of Cluster Headache Syndrome
It was a overcast weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation sprang behind my one eye. This was followed by quick shocks, similar to lightning bolts. As the school day came and went, the pain eased and then came back with greater intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.
The attacks returned repeatedly that fall, and again in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically start with severe pain around a single eye that lasts for several hours.
About one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks usually start with abrupt, severe pain focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of long pain-free periods.
What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Wales, 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 her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often mistook her attacks as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national hospital.
Still, the inability to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.
Ancient medical records suggest unusual remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies including 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 describes a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.
Cluster headaches were only formally classified by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the brain. Leading experts in treating the condition explain this.
In the late 1990s, researchers released the findings of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such advances, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.
Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.
National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known people.
But consultant specialists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent attacks are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.
The national guidelines need updating to reflect a
