Excruciating Pain: My Struggle Against the Mysterious Pain of Cluster Headaches
It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain erupted behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with greater force. Multiple 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 unbearable.
The headaches returned frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition typically begin with intense pain around one eye that persists up to three hours.
About one in 1,000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually start with sudden, severe pain around one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, defined by the absence of extended pain-free periods.
What unites patients is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “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 dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis 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 social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described throughout history. “The first description 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 evil spirit who afflicted his victims' heads.
Historical medical texts suggest unusual remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies including bloodletting to other, more superstitious cures.
It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.
The disorder were only formally recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Leading specialists in treating the disorder explain this.
In 1998, researchers released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity 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.
In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack passed.
Official guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known individuals.
But consultant specialists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short bouts with occasional episodes are managed with acute treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.
The national guidance need revising to reflect a
