Unbearable Suffering: My Struggle Against the Puzzling Suffering of Cluster Headache Syndrome
It was a dreary weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my right eye. Then came rapid jolts, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.
The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically start with severe pain behind a single eye that lasts for several hours.
Approximately 1 in 1000 individuals are affected by the condition, and males are more often affected. Cluster headaches usually start with sudden, severe agony around one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.
What unites patients is the intensity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.
One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a national hospital.
Still, the failure to organize life around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children 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 facility.
Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.
Historical medical texts propose unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.
The disorder were only officially recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Leading specialists in diagnosing the disorder explain this.
In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a doctor researched his complaints.
Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, 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 extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack eased.
National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some people.
But leading neurologists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief cycles with infrequent episodes are handled with acute therapy alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.
The official guidance need revising to reflect a
