Unbearable Suffering: My Struggle Against the Puzzling Pain of Cluster Headaches
It was a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my right eye. This was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.
The attacks returned frequently that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with intense pain behind a single eye that lasts for several hours.
About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches usually begin with sudden, severe pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, characterized by the absence of long symptom-free periods.
What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.
One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.
Her family often mistook her episodes as intoxicated behavior. 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 relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.
Nevertheless, the inability to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.
Historical medical texts suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.
It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Prominent specialists in treating the disorder explain this.
In 1998, researchers published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
Despite such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.
Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some people.
But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional episodes are managed with abortive treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.
The official guidance need updating to reflect a
