Excruciating Suffering: My Battle Against the Mysterious 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 sharp sensation bloomed behind my one eye. Then came quick jolts, similar to electric shocks. As the school day came and went, the pain eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.
The headaches appeared frequently that fall, and again in spring, soon establishing an yearly pattern. 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 pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with intense discomfort around one eye that persists for three hours.
About 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of long pain-free periods.
What connects sufferers is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.
Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, like several causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her family often interpreted her episodes as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.
Still, the inability to plan life around unpredictable pain took its effect. She particularly hated 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 small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.
Ancient medical records propose unusual remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.
Cluster headaches were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in treating the condition note this.
In 1998, researchers published the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a doctor researched his symptoms.
Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.
National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.
But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are handled with abortive treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. 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 signals.
The national guidelines need updating to reflect a
