Unbearable Pain: My Fight Against the Mysterious Suffering of Cluster Headache Syndrome
It was a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense pain erupted behind my right eye. It was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, the pain eased and then returned with increased force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.
The headaches appeared repeatedly that fall, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition often start with severe pain around one eye that lasts up to several hours.
About one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Attacks typically start with abrupt, severe pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.
What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.
One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her attacks as drunken episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.
Nevertheless, the inability to organize daily activities around erratic pain took its toll. She particularly 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 most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.
Historical medical texts propose bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.
The disorder were only officially classified by international headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in treating the condition note this.
In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and medication until the attack passed.
Official guidance on management advise that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known individuals.
But leading specialists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are handled with acute therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The official guidance need updating to reflect a
