Unbearable Pain: My Fight With the Enigmatic Suffering of Cluster Headache Syndrome
It began on a dreary Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my right eye. This was followed by rapid stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then returned with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.
The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often begin with intense discomfort around a single eye that persists up to three hours.
Approximately one in 1,000 people suffer by the condition, and males are more often affected. Cluster headaches typically start with sudden, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.
What unites patients is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.
One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like many causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.
Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Ancient medical texts suggest bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.
The disorder were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Prominent experts 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 observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.
Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.
A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen therapy and drugs until the attack eased.
National guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of some people.
But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short bouts with occasional attacks are managed with acute therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve activity.
The national guidance need revising to reflect a
