Full-Blown Pain: My Battle With the Enigmatic Suffering of Cluster Headache Syndrome
It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my one eye. Then came quick stabs, like electric shocks. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.
The attacks returned repeatedly that fall, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with severe pain around one eye that persists up to three hours.
About 1 in 1000 people are affected by the condition, and males are more often affected. Attacks usually start with sudden, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the absence of extended symptom-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.
One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her family often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the failure to plan life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Ancient healing texts suggest bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.
It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially classified by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent specialists in treating the condition note this.
In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a doctor looked up his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.
A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.
Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.
But leading specialists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Brief bouts with occasional episodes are managed with acute therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve activity.
The national guidelines need updating to reflect a