Excruciating Pain: My Struggle Against the Puzzling Pain of Cluster Headaches
It began on a overcast Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. This was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.
The headaches returned frequently that fall, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often start with intense discomfort around one eye that lasts for several hours.
About one in 1,000 people suffer by the condition, and males are more often diagnosed. Attacks usually begin with abrupt, excruciating agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.
What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.
Nevertheless, the failure to organize daily activities around unpredictable pain 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 worst episodes. “It robs you of the small freedoms we don't appreciate 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 the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.
Ancient healing texts suggest unusual remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.
The disorder were only formally recognised by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Prominent experts in treating the condition explain this.
In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.
Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack passed.
National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.
But consultant specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are managed with acute treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.
The official guidelines need revising to reflect a
