Excruciating Pain: My Struggle With the Puzzling Pain of Cluster Headaches
It was a overcast Monday in the morning in the autumn of 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 rapid jolts, like lightning bolts. As each class came and went, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.
The headaches appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition typically begin with severe discomfort around a single eye that lasts up to several hours.
Approximately 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.
What unites patients is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.
Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like several causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her family often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.
Still, the inability to plan daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical records propose bizarre remedies for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.
The disorder were only formally recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Leading experts in diagnosing the disorder note this.
In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify 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, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.
National guidance on management recommend that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known individuals.
But leading specialists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short bouts with infrequent episodes are handled with acute treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.
The national guidance need revising to reflect a