Excruciating Agony: My Battle With the Mysterious Suffering of Cluster Headaches
It began on a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the pain eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.
The attacks appeared repeatedly that autumn, and again in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often begin with severe pain around one eye that lasts up to three hours.
Approximately one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Attacks usually begin with abrupt, severe agony focused on one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of extended 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 headache patients reported suicidal thoughts during attacks; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her family often interpreted her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.
Still, the inability to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis 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 throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil entity who attacked his victims' heads.
Historical medical records propose unusual treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more folk cures.
It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Leading experts in diagnosing the disorder note this.
In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.
Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode passed.
Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known people.
But consultant neurologists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief bouts with infrequent episodes are handled with abortive therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, 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 head where the discomfort is that decreases nerve activity.
The national guidance need updating to reflect a
