Unbearable Pain: My Struggle Against the Mysterious Pain of Cluster Headache Syndrome
It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. This was followed by quick jolts, like electric shocks. As the school day came and went, the discomfort eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with severe discomfort around one eye that lasts up to several hours.
About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, defined by the lack of long pain-free periods.
What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Support 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 relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to organize life 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 looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small 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 portable toilet.
Headaches have been documented across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.
Historical healing records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.
The disorder were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the disorder note this.
In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent 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 felt better.
In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works 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 symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode passed.
Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some individuals.
But leading neurologists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief bouts with occasional attacks are handled with acute treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.
The official guidelines need revising to reflect a
