Unbearable Pain: A Personal Battle Against the Puzzling Suffering of Cluster Headache Syndrome
It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by quick stabs, like lightning bolts. As each class progressed, the pain subsided and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.
The headaches returned frequently that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with severe discomfort behind a single eye that lasts up to several hours.
About 1 in 1000 people suffer by the disorder, and men are more often affected. Attacks typically begin with abrupt, severe agony focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the absence of long symptom-free periods.
What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.
Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. 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 most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who afflicted his victims' heads.
Ancient healing records propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.
Cluster headaches were only formally classified 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 artery that delivers blood to the brain. Leading specialists in diagnosing the disorder note this.
In 1998, scientists released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.
Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.
National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.
But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with acute treatment only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The national guidance need updating to reflect a
