Unbearable Agony: My Battle Against the Enigmatic Pain of Cluster Headache Syndrome
It was a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense pain bloomed behind my one eye. It was followed by quick shocks, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.
The headaches returned frequently that fall, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with intense discomfort behind one eye that lasts up to three hours.
About 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches typically begin with sudden, excruciating pain around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.
What connects sufferers is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to several causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her family often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national hospital.
Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis 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 obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.
Ancient healing records propose bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.
Cluster headaches were only officially classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.
In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.
Specialists 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 headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.
Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some individuals.
But leading specialists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short cycles with infrequent episodes are handled with acute therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.
The official guidelines need revising to reflect a
