Unbearable Suffering: A Personal Struggle Against the Mysterious Suffering of Cluster Headaches
It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation sprang behind my right eye. This was followed by rapid jolts, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.
The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches often start with severe pain behind one eye that persists up to several hours.
About 1 in 1000 people are affected by the condition, and males are more often affected. Cluster headaches typically begin with sudden, excruciating agony around one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.
What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.
Still, the failure to organize life around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an evil spirit who attacked his victims' heads.
Historical medical records propose unusual remedies for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.
Cluster headaches were only formally classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in treating the disorder note this.
In the late 1990s, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, 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 sinus problems; he had four surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.
Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen treatment and medication until the attack passed.
Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief bouts with occasional attacks are managed with abortive therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.
The national guidance need updating to reflect a
