Excruciating Suffering: A Personal Battle Against the Puzzling Pain of Cluster Headache Syndrome
It was a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain erupted behind my right eye. This was followed by rapid stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks returned repeatedly that fall, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with intense discomfort around one eye that lasts for three hours.
About 1 in 1000 individuals are affected by the condition, and males are more often affected. Cluster headaches usually start with sudden, excruciating pain around a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; some patients have chronic attacks, defined by the absence of extended pain-free periods.
What connects patients is the severity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally 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 office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.
Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She especially disliked 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 paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.
Ancient medical records propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.
It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.
Cluster headaches were only formally recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in treating the condition explain this.
In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in 2014, after a doctor researched his complaints.
Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.
Official guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.
But leading specialists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with infrequent episodes are managed with abortive therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.
The national guidelines need revising to reflect a
