Full-Blown Suffering: My Struggle Against the Enigmatic Pain of Cluster Headaches
It was a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. Then came rapid shocks, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.
The headaches appeared repeatedly that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.
This condition typically begin with severe pain around a single eye that persists for three hours.
Approximately one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Attacks usually start with abrupt, excruciating pain around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.
What connects sufferers is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.
One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.
Still, the failure to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small 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 portable toilet.
Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.
Ancient healing records propose unusual treatments for what modern experts would classify as a migraine. 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 first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.
The disorder were only formally classified by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the disorder note this.
In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.
Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate treatments.
A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and medication until the episode eased.
National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.
But consultant neurologists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Short cycles with occasional attacks are handled with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve activity.
The national guidance need updating to reflect a
