Full-Blown Suffering: My Fight With the Mysterious Pain of Cluster Headaches
It was a overcast weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain erupted behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class came and went, the pain eased and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.
The attacks appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often begin with intense discomfort around one eye that lasts up to three hours.
About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, characterized by the lack of long pain-free periods.
What connects patients is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, like many causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.
Her family often mistook her episodes as drunken behavior. 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 took clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.
Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.
Ancient medical records suggest bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.
The disorder were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading experts in treating the disorder explain this.
In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
Despite such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a physician looked up his complaints.
Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate therapies.
Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater 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 volunteer guided them through oxygen treatment and medication until the attack eased.
National guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics 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 revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are handled with acute therapy alone. More prolonged or more severe 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 area of the skull where the pain is that decreases nerve signals.
The national guidance need updating to reflect a