Unbearable Pain: My Struggle Against the Puzzling Suffering of Cluster Headache Syndrome
It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain erupted behind my right eye. Then came quick jolts, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with greater force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.
The headaches appeared frequently that autumn, and again in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often start with intense pain behind a single eye that lasts for several hours.
About one in 1,000 people suffer by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of long pain-free periods.
What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.
Still, the inability to organize life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.
Ancient medical records suggest unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.
Cluster headaches were only formally recognised by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Prominent experts in treating the disorder note this.
In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent 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 progress, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a doctor researched his symptoms.
Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a calm advisor guided them through oxygen treatment and drugs until the attack passed.
National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of some people.
But leading specialists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short bouts with infrequent attacks are managed with acute treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.
The official guidance need updating to reflect a
