Unbearable Suffering: My Fight Against the Mysterious Pain of Cluster Headaches
It was a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.
The headaches appeared frequently that fall, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often begin with severe pain behind a single eye that lasts for several hours.
Approximately 1 in 1000 people are affected by the condition, and males are more frequently affected. Attacks usually begin with abrupt, severe pain around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.
What connects sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.
Nevertheless, the failure to plan life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children 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 remembers winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.
Ancient healing texts suggest unusual remedies for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.
It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.
The disorder were only officially classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the head. Prominent experts in diagnosing the condition explain this.
In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.
Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced 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 molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and drugs until the attack eased.
National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some individuals.
But consultant neurologists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief cycles with occasional episodes are handled with acute treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The national guidelines need updating to reflect a
