Unbearable Agony: A Personal Struggle Against the Puzzling Pain of Cluster Headache Syndrome
It was a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain erupted behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.
The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with intense discomfort around one eye that persists up to three hours.
About 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Attacks usually start with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, characterized by the absence of long pain-free periods.
What unites patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated episodes. 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 found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Still, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, 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 small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical records suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more folk cures.
It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Prominent specialists in treating the condition note this.
In 1998, researchers published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
In spite of such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a physician researched his symptoms.
Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack passed.
Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of some people.
But leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional episodes are managed with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.
The national guidelines need revising to reflect a
