A Quest to Find Relief from Hellish Cluster Headache Pain

A Quest to Find Relief from Hellish Cluster Headache Pain

“It’s like someone took a knife and jabbed it into the back of my eye and kept turning it around and around. At the same time, there’s so much pressure behind my eye, it feels like my entire head is about to explode,” says Preben Worm, describing what a cluster headache attack feels like.

Starting in 2002, Preben suffered from cluster headache attacks three or four times a day on and off for eight years. Cluster headaches, considered the most severe headache a person can have, occur in “bouts” or cycles. He would experience daily attacks for three months and then be pain-free for another three months. This relentless cycle went on and on.

To make matters worse, for the first five years, both Preben and his doctors struggled to understand what was causing his headaches and how to treat them.

A Life Turned Upside Down

According to his wife, Inge, before the attacks started, Preben led an upbeat, fulfilling life as a family man and self-employed carpenter in Denmark. “He was a happy guy, the life of the party. We often went out together.”

Never one to whine or complain, he was a tough guy by all accounts. “If he accidentally slashed his finger while working, he’d stitch it up himself,” she says. “He didn’t go to the doctor.”

Inge, a nurse, knew his headache pain had to be severe because Preben’s reaction was so extreme — and out of character for him.

Like so many cluster headache sufferers, who often experience attacks at night, Preben couldn’t sleep or sit still. He became increasingly agitated and “banged his head on the wall in frustration. I’d thought he’d lost his mind or that he might be having a brain hemorrhage,” Inge says.

So Many Doctors, So Few Answers

Initially, his eye surgeon attributed the pain to scarring from a prosthetic glass eye he’d implanted before the headaches began. During surgery, his doctor discovered arthritic nodules in his eye cavity. Eight operations to remove those and a new glass eye later, the headaches persisted.

Preben’s teeth started hurting, so he went to a dentist who removed most of the teeth on the upper right side of his mouth in hopes of alleviating his pain. Unfortunately, that didn’t help either. “My attacks only got worse, and it became difficult to work.”

Irritated that his dentist refused to remove one tooth considered healthy, during one cluster headache attack, Preben decided to remove the tooth himself — without pain killers. “Pulling my own tooth out was mild compared to my headache pain.”

Not the Man I Married

He lived on pain killers and became increasingly depressed and irritable, but never gave up the search for answers. He visited a chiropractor, an acupuncturist and explored other alternative therapies, all to no avail.

Over time, Inge says, “He isolated himself more and more. He couldn’t go anywhere because he never knew when he’d have another attack. I had to go alone to social activities. It’s hard to see the person you love suffer that way and be unable to do anything.”

At one point, Preben even talked about taking his own life. “I felt scared and helpless, afraid I was going to lose him,” Inge says.

Finally, a Correct Diagnosis

It took Preben five years before a neurologist correctly diagnosed his disorder as “cluster headache” (also known as Horton’s Headache) in 2007.

The neurologist advised him to go to Glostrup Hospital in Copenhagen, Denmark, where he met Rigmor Jensen, M.D., Director of the Danish Headache Center and professor of Neurological and Headache Pain at the University of Copenhagen.

Dr. Jensen treated him with a sumatriptan injection, which helped minimize his pain for two years. But the attacks continued, and he became increasingly worried about the side effects of all the medications he’d taken for years.

In 2009, Dr. Jensen asked Preben if he’d like to participate in a clinical trial for a new medication-free cluster headache treatment.

Without Hesitation

“I said yes immediately,” Preben said.

He became the fourth person in the world to have the Pulsante® SPG Microstimulator inserted in his upper jaw. The microstimulator is a “neurostimulationr” device that communicates with the sphenopalatine ganglion (SPG), a nerve bundle located deep in the face where cluster headache pain is registered.

Today, when he 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” his pain.

Success at Last

Preben explains that when he activates the microstimulator, “It feels like bees swarming inside my head that fly away and take my pain away.”  Thanks to the device, “I’m completely pain free.”

Once he realized it was going to work for him, he says, “I felt like kissing everyone one I met.”

There is No Cure

Despite the vast improvement Preben experienced with neurostimulation and other treatments that help patients manage their pain, Dr. Jensen emphasizes that currently, there is no cure for cluster headache.

“While many patients with cluster headache can be treated with triptans and oxygen and some preventive medicines, there are a high number of patients with very frequent attacks, who cannot tolerate or do not want to take the medications. The Pulsante® SPG Microstimulator offers a very good alternative for those patients.”

She adds that medications used to treat cluster headache often have side effects. And while breathing oxygen is a “cheap and good way” to alleviate an attack, it’s not convenient to carry an oxygen tank wherever you go.

Dr. Jensen says, “It was really fantastic for me as a doctor to see patients like Preben get relief very quickly. I was surprised it worked so fast and without any side effects.”

A Happy Ending

The microstimulator “has given me freedom,” Preben says. “I can participate in everything. I can play football with my grandkids in the backyard. My kids have their old daddy back. Before, I had to take my large 10-liter oxygen bottle and mask and syringe everywhere. Now, I just have to carry this little remote.”

His wife is just about as happy as he is that it worked. “He’s his old self again, so much happier and more positive. We can do things together again. I’ve got my husband back. It was amazing.”

How does it feel to be pain free after so many years of suffering? “Like I could fly to the moon,” Preben says.

Watch Preben’s Story

Watch the video above to learn more about Preben’s quest to find relief from cluster headache. Meet Jorgen, 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

Clinical results from the European clinical trial that Preben participated in found that patients were able to treat 67.1 percent of their cluster headache attacks within 15 minutes of using the Pulsante® SPG Microstimulator. And, a reduction in the number of attacks was also observed by researchers.

Learn more about the Pulsante® SPG Mircostimulator System.

 

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