Facial pain group wants more recognition for disorder dubbed 'suicide disease'
Published Monday, June 10, 2013 11:00AM EDT
Trigeminal neuralgia is a condition that causes such severe, and sometimes unbearable facial pain, it’s been dubbed “the suicide disease.” And yet, most people have never heard of the condition. Now a group is hoping to change that.
Michael Pasternak is the founding trustee of the Facial Pain Research Foundation and suffered from the condition for several years before surgery was able to help him.
He says trigeminal neuralgia is marked by sharp, electrical shock-like pain that shoots into the face, often at the jaw, though sometimes at the ear, eyes or lips.
“It’s a nerve disorder that’s simply the most painful condition known to humankind,” Pasternak told CTV’s Canada AM Monday from Gainesville, Florida.
“It is so powerful, you’re folded to your knees to the ground. It can last for seconds or minutes, and it can happen many times during the day.”
Pasternak says the disorder is caused by damaged nerve fibres in the trigeminal nerve, the major nerve that runs from the base of brain into one’s face. He says damage occurs typically at the base of brain, where blood vessels compress and damage the nerves.
The condition is relatively rare, which may be why it often takes patients many years to be diagnosed. For Pasternak himself, it was two and half years before doctors discovered what was behind his pain.
He says some patients are misdiagnosed with shingles; others go to their dentists first, because the pain is in their jaw. He knows of one woman in Ireland who says a dentist pulled all her teeth before a doctor was finally able to diagnose her with trigeminal neuralgia.
Pasternak says the treatments for the condition are not great.
“All our treatments and medications are as old as 40 years old,” he says. “There are surgeries and medicines. Unfortunately, they work for some and not for others.”
Pasternak tried anti-epileptic medications, which would put the condition into remission but left him feeling so groggy, he fell asleep twice at the wheel.
Eventually, he had a type of surgery called microvascular decompression surgery that made the pain go away. But he says he’s one of only three people he knows who has been pain free from the disorder for 20 years.
“It’s something I always worry will return -- and that’s why it’s called the suicide disease. Patients who have this and have gone through treatments and medicines and surgeries that haven’t worked often threaten to kill themselves. And unfortunately, many families contact me to say that has occurred.”
Two years ago, Pasternak’s Trigeminal Neuralgia Association formed a research arm, the Facial Pain Research Foundation. He says there are now four international consortiums of scientists who are working to better understand the condition.
Their aim is to find a cure by 2020, while also developing therapies to help those with other nerve-generated pains and diseases. Researchers also hope to understand why people with multiple sclerosis are so much more likely to develop the condition.
As well, Pasternak says the foundation wants to raise awareness about the condition and to have its severity recognized.
“We have numerous volunteers who are trying to petition the World Health Organization to add this to their list of disease that need to be cared for,” he says.