Excruciating Agony: My Struggle With the Puzzling Suffering of Cluster Headache Syndrome
It began on a gloomy Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain sprang behind my one eye. This was followed by rapid stabs, like electric shocks. As the school day came and went, the pain eased and then returned with increased force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.
The attacks returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often begin with intense pain around one eye that lasts for three hours.
Approximately one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, severe pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the lack of extended pain-free periods.
What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.
Her family often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “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, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the failure to organize life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.
Historical healing records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk cures.
It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.
Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Leading specialists in diagnosing the condition note this.
In 1998, researchers published the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
Despite such advances, identification remains slow. One man's attacks 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 operations before finally being diagnosed in 2014, after a physician looked up his complaints.
Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.
Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.
National guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some people.
But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short cycles with infrequent episodes are managed with acute therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.
The national guidelines need updating to reflect a
