Excruciating Pain: My Battle Against the Puzzling Pain of Cluster Headaches
It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.
The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with severe pain behind one eye that persists up to three hours.
Approximately 1 in 1000 people suffer by the disorder, and men are more often affected. Cluster headaches typically start with sudden, excruciating pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.
What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “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. Alcohol in her teens, similar to several triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.
Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.
Historical medical texts suggest bizarre treatments for what some observers would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.
Cluster headaches were only formally classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading specialists in diagnosing the condition note this.
In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.
Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack eased.
National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known people.
But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief cycles with infrequent episodes are handled with acute treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.
The national guidelines need revising to reflect a