Excruciating Agony: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome
It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my right eye. It was followed by rapid stabs, like lightning bolts. As each class progressed, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.
The headaches returned repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on agony in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.
This condition typically start with intense pain around one eye that lasts for three hours.
About 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches usually start with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.
What unites sufferers is the severity. One study rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes began 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. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often mistook her episodes as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist neurology center.
Still, the inability to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.
Ancient medical texts suggest unusual treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.
Cluster headaches were only formally classified by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in diagnosing the disorder explain this.
In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.
Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some people.
But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief cycles with infrequent attacks are managed with abortive treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.
The official guidance need updating to reflect a
