Unbearable Agony: My Struggle With the Enigmatic Pain of Cluster Headaches
It began on a gloomy weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation erupted behind my one eye. It was followed by rapid shocks, like electric shocks. As each class came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.
The attacks returned frequently that fall, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
This condition typically start with intense discomfort around one eye that persists up to three hours.
Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Cluster headaches typically start with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value 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 described throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.
Historical healing texts propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.
It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.
The disorder were only formally recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in diagnosing the condition note this.
In 1998, researchers released the results 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 medical publication, showed activation 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 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.
Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate therapies.
Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack eased.
National guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.
But leading specialists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short bouts with occasional attacks are managed with abortive treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that decreases nerve activity.
The official guidance need updating to reflect a
