Excruciating Suffering: My Struggle With the Enigmatic Pain of Cluster Headaches
It was a gloomy Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. Then came rapid stabs, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with greater force. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.
The attacks returned frequently that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.
This condition often start with intense pain around one eye that lasts for several hours.
Approximately 1 in 1000 people are affected by the condition, and males are more frequently affected. Attacks typically start with sudden, excruciating pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.
What unites patients is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number fell to 4% when they were not in pain.
One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the transport home.
Her family often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate 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, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to organize life around unpredictable pain took its toll. She particularly disliked 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 worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Historical healing records suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.
The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading specialists in diagnosing the disorder note this.
In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a physician looked up his complaints.
Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate therapies.
Dorothy Chapman, 78, 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 twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack eased.
National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some individuals.
But consultant specialists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with abortive therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, 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 head where the pain is that decreases nerve activity.
The official guidance need revising to reflect a
