Excruciating Pain: My Battle Against the Puzzling Pain of Cluster Headache Syndrome
It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. Then came quick jolts, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.
The attacks returned frequently that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically start with severe pain behind one eye that lasts up to several hours.
About 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Attacks typically start with sudden, severe pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.
What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.
One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Nevertheless, the failure to plan life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple 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 description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.
Ancient healing records suggest bizarre treatments for what some observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.
The disorder were only officially recognised by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Leading specialists in diagnosing the condition note this.
In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a doctor researched his symptoms.
Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the attack eased.
National guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of some individuals.
But consultant neurologists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief cycles with infrequent attacks are managed with acute therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.
The official guidelines need updating to reflect a