Excruciating Pain: My Battle With the Enigmatic Suffering of Cluster Headache Syndrome
It was a gloomy Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden pain erupted behind my one eye. Then came quick shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The headaches appeared frequently that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with severe discomfort around one eye that lasts up to three hours.
Approximately one in 1,000 people suffer by the disorder, and males are more often affected. Attacks typically start with abrupt, excruciating agony around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, defined by the absence of long pain-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.
One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her family often mistook her attacks as drunken episodes. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national hospital.
Still, the inability to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst 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 attack inside a portable toilet.
Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical records propose bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.
The disorder were only formally recognised by global headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in treating the disorder note this.
In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
Despite such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks 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 attack in 2021; a calm volunteer guided me through oxygen treatment and medication until the episode eased.
National guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of some people.
But leading specialists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Brief cycles with occasional attacks are handled with abortive treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.
The national guidance need revising to reflect a
