Unbearable Pain: My Battle Against the Enigmatic Suffering of Cluster Headache Syndrome
It was a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain erupted behind my right eye. It was followed by quick stabs, similar to electric shocks. As the school day came and went, the pain subsided and then came back with increased force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.
The headaches returned frequently that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with severe discomfort behind a single eye that lasts for three hours.
About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.
One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like many triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.
Still, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky 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 freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.
Historical healing records propose unusual remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.
Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in treating the disorder explain this.
In 1998, scientists released the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a doctor looked up his complaints.
Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.
National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.
But consultant neurologists believe the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are handled with abortive treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve signals.
The official guidelines need updating to reflect a
