Full-Blown Pain: My Fight With the Enigmatic Suffering of Cluster Headache Syndrome
It was a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. This was followed by rapid jolts, like electric shocks. As the school day progressed, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The headaches appeared repeatedly that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often start with intense pain behind one eye that persists for three hours.
About one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches usually start with sudden, severe pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.
What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.
One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.
Her family often mistook her attacks as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to organize life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who afflicted his victims' heads.
Ancient healing texts suggest unusual treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.
Cluster headaches were only formally classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Leading experts in treating the disorder note this.
In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen treatment and medication until the episode passed.
National guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known people.
But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Short bouts with infrequent attacks are handled with abortive treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.
The national guidelines need revising to reflect a
