Unbearable Pain: My Fight Against the Enigmatic Pain of Cluster Headaches
It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. It was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.
The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with severe pain around one eye that lasts up to three hours.
Approximately 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically start with sudden, severe agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.
What connects patients is the severity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Still, the inability to plan 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 paralysis caused by the most severe episodes. “It robs you of the simple 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 documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an evil spirit who attacked his victims' heads.
Historical healing records suggest bizarre treatments for what some observers would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk cures.
It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.
The disorder were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent specialists in treating the disorder note this.
In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a major 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 felt better.
Despite such advances, diagnosis 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 surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.
Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.
Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.
National guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known individuals.
But leading specialists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of 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 guidance need revising to reflect a
