Full-Blown Agony: A Personal Fight With the Mysterious Suffering of Cluster Headache Syndrome
It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation sprang behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.
The headaches appeared repeatedly that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically begin with severe pain behind a single eye that persists for three hours.
About one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, severe agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.
What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her family often interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.
Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.
Ancient healing records suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.
It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.
Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition note this.
In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
Despite such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack passed.
National guidelines on management recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known people.
But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional attacks are handled with abortive treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve activity.
The national guidance need revising to reflect a
