Excruciating Suffering: My Battle Against the Mysterious Suffering of Cluster Headaches
It began on a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with greater force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.
The attacks returned frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often start with severe discomfort behind one eye that lasts up to three hours.
Approximately one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her relatives often interpreted her attacks as drunken 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 found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.
Still, the inability to plan life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.
Ancient healing texts suggest bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.
The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.
In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a doctor researched his complaints.
Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.
A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm advisor talked me through oxygen treatment and medication until the attack eased.
National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some individuals.
But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with occasional episodes are handled with abortive treatment only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The national guidance need updating to reflect a
