Unbearable Suffering: A Personal Battle With the Enigmatic Pain of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my right eye. It was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.
The headaches returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often start with intense discomfort around one eye that lasts up to several hours.
About 1 in 1000 people suffer by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, excruciating agony around a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.
What unites sufferers is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to organize life around erratic pain took its toll. She particularly 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 incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.
Historical healing texts propose bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.
Cluster headaches were only officially classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent experts in treating the disorder note this.
In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. 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 discomfort, and a deactivation when they recovered.
Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.
Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor guided them through oxygen treatment and drugs until the attack eased.
National guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.
But leading neurologists believe the official guidelines need revising 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 determines the treatment.” Brief cycles with infrequent episodes are managed with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.
The official guidelines need updating to reflect a
