Unbearable Agony: A Personal Struggle With the Enigmatic Suffering of Cluster Headaches
It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation sprang behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the pain subsided and then returned with greater intensity. Four 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 aspirin, but the pain remained unrelenting.
The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
This condition typically begin with intense discomfort behind a single eye that lasts for three hours.
Approximately one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Cluster headaches typically begin with sudden, severe agony focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of long symptom-free periods.
What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.
One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national hospital.
Nevertheless, the inability to organize daily activities around erratic 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 cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.
Historical medical texts propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.
The disorder were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Leading experts in diagnosing the disorder explain this.
In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, 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 advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a doctor researched his symptoms.
Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack passed.
National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some people.
But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief cycles with occasional attacks are managed with acute treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.
The national guidelines need updating to reflect a
