Excruciating Pain: My Struggle With the Enigmatic Suffering of Cluster Headache Syndrome
It was a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense pain erupted behind my one eye. Then came rapid jolts, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.
The attacks returned repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often start with intense pain behind a single eye that persists for three hours.
About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches usually start with abrupt, excruciating pain focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, characterized by the absence of long pain-free periods.
What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.
Still, the failure to plan life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst 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 earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.
Historical medical texts suggest unusual remedies for what modern experts would describe as a migraine. 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 European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.
In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a physician researched his complaints.
Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.
A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.
National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some people.
But consultant specialists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short cycles with occasional attacks are managed with abortive therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.
The official guidance need revising to reflect a
