Ending Eight Years of Daily, Unbearable Cluster Headache Pain
Jörgen Hjorgh suffered from chronic cluster headache attacks for eight years before finding relief.
Known as the “suicide headache,” cluster headaches are considered among the most painful headaches a person can have, more intense than a migraine, but usually shorter in duration. One of the most commonly misdiagnosed disorders, it can take years for those suffering from cluster headache to get a proper diagnosis.
While there are promising new treatments, unfortunately, there is no cure.
Living with Torturous Pain
“The pain is so awful,” Jörgen says, “it feels like I got a hammer pounding in my head. I get dizzy, tired, I just want to be in a dark room mumbling naughty words until it passes.”
Perpetually exhausted, agitated and angry, he was forced to retire from his job teaching computer classes at a trade school and from a second job in construction.
He missed gardening, his favorite hobby. He stopped being able to take his wife out, which took a toll on their relationship. “I had a very low appetite. I didn’t want to talk to anybody. I didn’t want to look at anything, see any newspapers, books, computer, anything. I just wanted to be in a dark room and wait for it to pass.”
Most people with the condition experience a series of several intense cluster headache attacks, each lasting about a half hour to an hour and a half, over a period of days or weeks, followed by a break of weeks or even months.
Misdiagnosed for Three Years
Jörgen wasn’t so lucky. Though his attacks came two or three times a week in the beginning, eventually they occurred daily — with no breaks — for an incredible eight years. Even worse, for the first three years of attacks, his primary doctor misdiagnosed his case.
Since his right eye was red and swollen shut, his doctor assumed he had an eye infection. Jörgen took daily antibiotics for years, which did nothing to help his condition. He even had surgery to raise the lid on the affected eye so he could see.
What he didn’t know at the time is that eye reddening and eyelid swelling are classic symptoms of cluster headache.
During the first three years of attacks, Jörgen endured countless examinations from about 50 doctors at six hospitals before finally finding help at the Danish Headache Center in Copenhagen, Denmark. “They were able to diagnose my condition in just a week,” he says.
Why Did It Take So Long to Get a Proper Diagnosis?
According to Jörgen’s doctor, Rigmor Jensen, M.D., director of the Danish Headache Center and professor of Neurological and Headache Pain at the University of Copenhagen, “Cluster headache is a severely underdiagnosed and undertreated headache disorder. It can be regarded as ‘rare,’ but it is just as prevalent as Parkinson’s disease.”
Dr. Jensen says many of her patients, like Jörgen, took several years to find a doctor who has studied cluster headache and can offer treatment options. “In a country where all health care is free . . . money is not the barrier. It is lack of knowledge and information.”
One reason the condition is so hard to diagnose, Dr. Jensen says, is that people are often not in pain when they visit their doctor. “Very few doctors have seen their patient during an attack. It is difficult to understand that the normal person sitting in front of you, relaxed, can also be someone, so miserable during an attack, he or she is considering suicide.”
Jörgen recalls that his worst cluster headache bout lasted three days nonstop.
Like many cluster headache sufferers, Jörgen learned one trigger for him was alcohol, so he stopped drinking five years ago, but the headaches persisted.
While many experience cluster headaches mostly at night, Jörgen’s didn’t follow any pattern. He’d get them day and night. Each attack would leave him exhausted and depleted.
Finally, Help Arrives
For the first time, at the Danish Headache Center, he was given treatments that temporarily relieved his symptoms.
To begin, Dr. Jensen prescribed an injectable triptan medication commonly used to treat migraines. The drug works by relieving swelling of blood vessels in the brain. In order to receive an injection, Jörgen had to travel to the center, during an attack. “It would give me relief but I’d be exhausted afterwards and need to go to bed for hours.”
Dr. Jensen advised him that long-term use of triptans could be bad for his heart, so he had to be monitored carefully while hoping for a better solution.
He also tried oxygen. Dr. Jensen explains, “Oxygen is a good, cheap treatment for most cluster headache patients. They can have it at home, and it’s safe. But it needs to be administered early in an attack and patients find it inconvenient to take a hefty oxygen tank wherever they go — because you never know when you’ll have an attack.”
Not only did Jörgen find the oxygen tank heavy and cumbersome, it didn’t relieve his pain, he said.
A Promising New Treatment
After eight years of treatments that mostly failed to help him, he volunteered to participate in a clinical trial evaluating sphenopalatine ganglion (SPG) neurostimulation.
Jörgen readily agreed to participate in a clinical trial, which involved undergoing minimally invasive surgery.
He became the third person in the world to have a small, almond-sized Pulsante® SPG Microstimulator device implanted in his upper jaw.
The device is a “neurostimulator” that communicates with the Sphenopalatine Ganglion (SPG), a nerve bundle located deep in the face, behind the bony structures of the nose where cluster headache pain is registered. Because the SPG acts as a “fuse box” along the pain pathway of nerves in the brain, it has been a therapeutic target in the treatment of headaches for more than 100 years.1
Today, when Jörgen experiences a cluster attack, he takes a small, handheld remote controller to his cheek, which interrupts the pain signal in the SPG, essentially “turning off” the pain.
Success at Last
The good news is it worked. It took a few weeks to get the adjustments just right, but now, Jörgen says, thanks to the device, he experiences far fewer attacks, and when he does have an attack, the device stops his pain completely after about 15 minutes. He says the neurostimulator has relieved his pain consistently for a year and a half.
Instead of the daily attacks he endured for years, in the past two months, he says, “I’ve only had three attacks.”
He explains that to activate the neurostimulator, “I put it to my chin, and the headache slowly fades away.” His eyelids, which become swollen during attacks, open again.
Now he can garden, read books for hours, work at the computer and take his wife to the theater again —things he hadn’t been able to do for eight years. He was able to stop taking triptan, which had been hard on his heart.
There is No Cure
Dr. Jensen says that SPGS neurostimulation is a good option for patients like Jörgen who can’t tolerate medications or find them ineffective — or worry about side effects.
While neurostimulation isn’t right for every patient, Dr. Jensen says, “for patients who have very frequent attacks, this is absolutely a good alternative to that.”
She adds, “It was fantastic for me as a doctor to see patients get relief very, very quickly, and that it was a consistent relief. It worked so fast and without side effects. That’s really impressive.”
Meanwhile, Jörgen says, he’s grateful to finally have something that stops his cluster headache pain. “It’s given me my life back.”
Watch the video above to learn more about Jörgen’s quest to find relief from cluster headache and meet Preben, another cluster headache sufferer who found relief with the Pulsante SPG Microstimulator. Dr. Rigmor Jensen, also featured in the video, offers more details on the device and why she’s found it valuable for her patients.
Learn more about cluster headache and treatment options.
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