Excruciating Suffering: A Personal Battle With the Puzzling Suffering of Cluster Headache Syndrome
It began on a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.
The headaches appeared frequently that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with intense discomfort behind one eye that persists up to several hours.
About 1 in 1000 people are affected by the condition, and men are more often affected. Attacks usually begin with abrupt, excruciating pain around a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.
What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Wales, isn't surprised. 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 spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.
Still, the failure to plan life around unpredictable pain took its effect. She particularly disliked 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 paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.
Historical healing texts propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate 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 headache. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.
The disorder were only formally classified by global medical committees in the late 1980s. 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 head. Leading experts in diagnosing the condition note this.
In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
Despite such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a physician looked up his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack passed.
National guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known people.
But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief bouts with occasional attacks are managed with acute therapy alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.
The official guidance need updating to reflect a
