Unbearable Suffering: My Fight With the Mysterious Pain of Cluster Headache Syndrome
It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. This was followed by quick stabs, like electric shocks. As the school day came and went, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.
The attacks returned frequently that fall, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with intense discomfort around one eye that persists for several hours.
About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks usually start with sudden, excruciating pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of long symptom-free periods.
What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her family often interpreted her attacks as intoxicated behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Ancient medical texts propose unusual treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.
The disorder were only formally 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. Leading experts in diagnosing the disorder note this.
In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician looked up his complaints.
Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate therapies.
A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack eased.
Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known individuals.
But leading neurologists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short cycles with occasional episodes are managed with abortive treatment only. Longer or more severe periods 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 skull where the pain is that decreases nerve signals.
The official guidelines need revising to reflect a
