Excruciating Agony: My Battle Against the Puzzling Suffering of Cluster Headache Syndrome
It was a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my one eye. Then came quick jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.
The attacks appeared repeatedly that fall, and once more in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain 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.
Cluster headaches often begin with severe pain behind a single eye that lasts for three hours.
Approximately 1 in 1000 people are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with sudden, severe agony focused on one eye that reaches its peak within minutes and lasts 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 facial perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the lack of long pain-free periods.
What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.
One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.
Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.
Historical medical texts suggest unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.
The disorder were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Leading experts in diagnosing the condition explain this.
In 1998, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a physician researched his complaints.
Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth 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 volunteer talked them through oxygen therapy and drugs until the episode passed.
Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some people.
But consultant specialists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short cycles with occasional episodes are managed with acute therapy alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.
The official guidelines need revising to reflect a
