Excruciating Pain: My Fight Against the Puzzling Pain of Cluster Headache Syndrome
It began on a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation bloomed behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with increased force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.
The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often start with severe pain behind a single eye that lasts up to several hours.
About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches usually start with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.
One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.
Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.
Historical medical texts propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.
The disorder were only officially recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent experts in diagnosing the disorder explain this.
In 1998, researchers published the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode eased.
Official guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known people.
But consultant specialists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief cycles with occasional episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
