Unbearable Pain: My Fight Against the Puzzling Pain of Cluster Headaches
It began on a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain bloomed behind my right eye. Then came quick jolts, like lightning bolts. As the school day came and went, the discomfort eased and then came back with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.
The attacks 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 pattern: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often begin with severe discomfort around a single eye that persists for several hours.
About 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks typically start with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.
One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.
Still, the failure to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate 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 history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.
Historical medical texts suggest unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more folk cures.
It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the condition note this.
In 1998, researchers published the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a physician looked up 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 common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.
Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known people.
But leading neurologists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the approach.” Brief bouts with occasional attacks are managed with acute treatment 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 bout – an injection into the area of the head where the pain is that decreases nerve signals.
The national guidelines need revising to reflect a
