Excruciating Suffering: A Personal Battle With the Puzzling Suffering of Cluster Headache Syndrome
It was a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.
The attacks returned frequently that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with intense pain behind a single eye that lasts for several hours.
Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches typically start with sudden, severe agony around a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of extended pain-free periods.
What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.
One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.
Her family often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Still, the failure to plan life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant 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 authors in a publication on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.
Ancient medical texts propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading experts in treating the disorder explain this.
In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
Despite such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.
Neurologists say wait times in diagnosis and managing 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 primary head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm advisor talked me through oxygen therapy and medication until the attack eased.
National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known people.
But consultant specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Short cycles with infrequent attacks are handled with acute treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve signals.
The official guidance need updating to reflect a
