Unbearable Pain: A Personal Battle With the Puzzling Pain of Cluster Headaches
It began on a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As each class progressed, the pain eased and then returned with greater force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.
The attacks returned repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
This condition often start with severe pain around a single eye that persists up to three hours.
About one in 1,000 individuals suffer by the condition, and men are more often affected. Attacks usually start with sudden, excruciating agony around a single eye that reaches its peak within a short time 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. I have the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the absence of long symptom-free periods.
What unites patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the inability to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from 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 portable toilet.
Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil spirit who afflicted his sufferers' heads.
Historical medical texts suggest unusual remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more folk cures.
It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.
The disorder were only formally recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Leading experts in diagnosing the disorder note this.
In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.
Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 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-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known people.
But leading neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short bouts with occasional episodes are handled with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.
The national guidelines need updating to reflect a
