Full-Blown Pain: My Battle Against the Puzzling Suffering of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain erupted behind my right eye. It was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.
The headaches appeared repeatedly that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.
This condition typically start with intense pain behind one eye that persists up to three hours.
About one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks typically start with sudden, excruciating agony around one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; others have continuous attacks, characterized by the lack of long pain-free periods.
What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.
One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. 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 took office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.
Nevertheless, the failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.
Ancient medical records propose bizarre remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.
It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.
Cluster headaches were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading experts in treating the condition explain this.
In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.
Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some individuals.
But consultant neurologists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with acute therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The official guidance need updating to reflect a
