Unbearable Suffering: My Struggle With the Enigmatic Suffering of Cluster Headaches
It was a overcast Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain bloomed behind my one eye. It was followed by rapid shocks, similar to lightning bolts. As the school day came and went, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.
The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically start with intense pain behind a single eye that persists for several hours.
About one in 1,000 individuals suffer by the disorder, and males are more often diagnosed. Attacks usually begin with abrupt, excruciating pain focused on one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.
What connects sufferers is the severity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.
One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the inability to organize daily activities around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.
Ancient medical texts suggest unusual treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.
Cluster headaches were only officially recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent experts in treating the condition note this.
In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, 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 progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.
Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.
National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.
But leading neurologists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Short cycles with infrequent attacks are handled with abortive therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.
The official guidance need updating to reflect a
