Excruciating Suffering: A Personal Fight Against the Enigmatic Pain of Cluster Headaches
It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain erupted behind my one eye. This was followed by quick jolts, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.
The attacks appeared frequently that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with intense pain around a single eye that persists for several hours.
About 1 in 1000 individuals are affected by the condition, and males are more often affected. Attacks usually start with sudden, severe agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have chronic attacks, characterized by the lack of extended symptom-free periods.
What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.
Still, the failure to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe 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 throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.
Ancient medical texts propose unusual remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.
It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.
The disorder were only officially classified by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Leading specialists in diagnosing the disorder note this.
In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. 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 pain, and a deactivation when they felt better.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a physician looked up his complaints.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. 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 support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor talked me through oxygen treatment and drugs until the episode passed.
National guidance on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some individuals.
But leading specialists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief cycles with occasional episodes are handled with acute therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.
The national guidelines need revising to reflect a
