Excruciating Suffering: A Personal Struggle Against the Enigmatic Suffering of Cluster Headache Syndrome
It was a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my one eye. This was followed by quick jolts, like lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The headaches appeared frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
This condition often start with intense pain around a single eye that persists up to several hours.
About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches typically start with sudden, severe pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the lack of long symptom-free periods.
What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.
One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.
Her family often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.
Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms 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 first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.
Historical medical records suggest bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent specialists in diagnosing the disorder note this.
In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.
Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive 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 episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a calm advisor guided me through oxygen treatment and medication until the attack eased.
Official guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known people.
But leading specialists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short bouts with occasional episodes are handled with abortive therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
