Unbearable Pain: My Fight Against the Enigmatic Pain of Cluster Headache Syndrome
It began on a overcast weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. It was followed by quick stabs, like electric shocks. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.
The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often start with intense pain behind a single eye that lasts up to several hours.
About one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks usually start with abrupt, severe pain around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.
What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her family often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.
Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.
Ancient healing records propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.
The disorder were only officially classified by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Prominent specialists in treating the condition explain this.
In 1998, scientists released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
In spite of such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a doctor looked up his complaints.
Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack passed.
National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known people.
But leading neurologists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with acute treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.
The official guidance need updating to reflect a
