Full-Blown Agony: My Fight Against the Mysterious Suffering of Cluster Headache Syndrome
It was a overcast Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by quick stabs, like lightning bolts. As each class came and went, the discomfort subsided and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.
The attacks returned frequently that autumn, and once more in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with intense pain around one eye that persists for several hours.
About 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks usually start with abrupt, severe agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; others have chronic attacks, characterized by the absence of extended symptom-free periods.
What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.
One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional 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 breakthrough identification came in the early 2000s at a specialist neurology center.
Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family 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 winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.
Ancient medical records suggest bizarre remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.
The disorder were only officially classified by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading specialists in diagnosing the condition note this.
In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.
Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen therapy and drugs until the episode passed.
Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some people.
But leading neurologists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short cycles with occasional attacks are handled with abortive treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve signals.
The national guidance need updating to reflect a