Excruciating Suffering: A Personal Battle Against the Mysterious Pain of Cluster Headache Syndrome
It was a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. It was followed by rapid stabs, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.
The headaches returned repeatedly that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically start with severe discomfort around one eye that persists for three hours.
About one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Cluster headaches usually start with abrupt, severe agony focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, defined by the lack of long pain-free periods.
What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.
Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her attacks as drunken behavior. Understanding 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 relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.
Nevertheless, the inability to organize life around unpredictable attacks took its toll. She particularly 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 incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.
Historical medical texts propose unusual treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.
It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only formally classified by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.
In the late 1990s, scientists published the results of a research project 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 hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.
National guidance on treatment 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 options include a blood pressure medication, which apparently helps manage the attacks of some individuals.
But consultant specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Short bouts with infrequent attacks are managed with abortive therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve signals.
The national guidelines need updating to reflect a
