Unbearable Suffering: A Personal Battle With the Mysterious Suffering of Cluster Headaches
It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. It was followed by rapid jolts, like lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.
The attacks appeared repeatedly that autumn, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with intense discomfort behind one eye that persists up to several hours.
About 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, severe pain around a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.
What unites patients is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist neurology center.
Nevertheless, the inability to organize life around erratic attacks 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 children during the paralysis 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 facility.
Headaches have been documented across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.
Historical healing texts propose bizarre treatments for what some observers would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments including bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.
The disorder were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading experts in treating the disorder note this.
In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.
Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack passed.
National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.
But consultant specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with acute treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that decreases nerve activity.
The official guidance need revising to reflect a
