Full-Blown Agony: My Struggle With the Mysterious Suffering of Cluster Headache Syndrome
It was a overcast Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation sprang behind my one eye. It was followed by rapid jolts, like electric shocks. As each class came and went, the pain subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.
The headaches returned frequently that autumn, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with severe pain behind one eye that persists for several hours.
About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.
What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.
Still, the inability to plan life around unpredictable pain 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 looked after by her children during the paralysis caused by the most severe 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 major concert, only to have an attack inside a facility.
Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.
Ancient medical texts propose unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more folk cures.
It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.
The disorder were only officially classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in diagnosing the condition note this.
In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a physician looked up his complaints.
Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.
Official guidance on management advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some people.
But leading neurologists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief bouts with infrequent episodes are handled with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.
The official guidance need updating to reflect a
