Excruciating Pain: My Fight Against the Enigmatic Pain of Cluster Headache Syndrome
It was a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a intense sensation bloomed behind my right eye. It was followed by quick shocks, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.
The attacks appeared repeatedly that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches often start with intense pain around a single eye that lasts for several hours.
Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.
What unites sufferers is the intensity. One research paper rated the pain 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 amid bouts; the figure fell to four percent when they were not in pain.
One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.
Still, the failure to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient healing texts propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.
The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent experts in treating the condition note this.
In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.
Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater education. 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 guided me through oxygen therapy and drugs until the episode passed.
National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.
But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief bouts with occasional episodes are handled with abortive treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.
The national guidelines need updating to reflect a
