Excruciating Agony: My Struggle With the Enigmatic Suffering of Cluster Headaches
It was a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain sprang behind my right eye. It was followed by quick shocks, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.
The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with intense discomfort behind a single eye that lasts for three hours.
About 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the lack of long pain-free periods.
What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.
One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began 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 symptoms worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Nevertheless, the failure to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from 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 episode inside a facility.
Headaches have been described throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.
Historical medical texts propose bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.
It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.
The disorder were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Leading specialists in diagnosing the condition explain this.
In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a physician researched his symptoms.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode passed.
National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some individuals.
But consultant neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with occasional episodes are handled with abortive treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.
The official guidelines need revising to reflect a
