Guilderland Archives — The Altamont Enterprise, April 14, 2011
Help in a heartbeat
Blanchette wants to start a support group for whooshers
By Jo E. Prout
Nicole Blanchette is a smart young woman with a husband, a career, and her life ahead of her. More than a year ago, her life course changed drastically from how she’d imagined it — she became a whoosher.
People who suffer from the condition called pulsatile tinnitus call themselves whooshers because of the constant sound of their heartbeats they hear in their ears. Blanchette hears whooshing in her left ear.
“It’s not anything to do with your ears,” she said. “It’s always, 100 percent of the time, from an additional cause.” Those causes, like aneurism or tumors, can often be treated, if they can be identified.
Blanchette and other whooshers want to raise awareness of their rare condition, which is different from regular tinnitus. Roughly 200 million people worldwide are diagnosed with tinnitus, characterized by ringing or high-pitched noise in the ears, Blanchette said. Pulsatile tinnitus affects only 3 percent of that group, and is treated primarily by two doctors in this country, including one in New York City, she said.
Regular tinnitus sufferers are often told by doctors to live with the sounds, she said. Pulsatile tinnitus is completely different, she said.
“It’s something that’s always serious,” Blanchette said. “It’s never something that will kill you tomorrow…but something in your body is out of whack.”
Whooshers are trying to have their rare condition renamed, with the tinnitus reference dropped, to reflect the difference between the two types, Blanchette said.
“We’re trying to separate ourselves from the regular tinnitus sufferers, but we still need support. We’re trying to become a non-profit,” Blanchette said. “There are ways to make this go away so you don’t have to live with it. But sufferers don’t know this.”
Losing sleep
Blanchette first thought she had water in her ears, and, later, that she was losing her hearing. Visits to several doctors did nothing to assuage her worries.
After she was told she might go deaf, Blanchette said, “I was losing sleep. All of sudden, my life had suddenly changed. I was petrified that I was losing my hearing.”
A local doctor diagnosed pulsatile tinnitus. Blanchette then had several tests, including an MRI (magnetic resonance imaging), to find the cause, she said. A majority of MRIs find nothing related to pulsatile tinnitus, Blanchette said, but she went through with it. She was told that the whooshing she hears is from one artery abnormally pumping blood into her brain.
“‘Oh my God,’” Blanchette remembered thinking. “‘I’m dying.’ I was petrified,” she said. Her doctor ran additional tests for another month, but found nothing definitive.
“I love to ski,” she said. “I was afraid to go and fall, and hit my head. I was always afraid to live my life. I was so consumed by it for such a long time.”
Blanchette began searching for answers elsewhere, and found forums online with “bad, horrific anecdotes,” she said. She also had so many tests that her family doctor advised her to avoid more CAT (computed axial tomography) scans for her own safety.
Blanchette then found the website www.Whooshers.com. On this site, whooshers connect and pool their information.
“Whooshers.com was not created to help patients self-diagnose themselves online; doing so is specifically discouraged on the site,” said Emma Greenwood, the founder of the site, in an e-mail to The Enterprise. “What the information provided on Whooshers.com can do and has done is empower the patient who is told to live with a symptom that in fact may not be regular tinnitus.”
Greenwood, a New York City resident who refers to herself as the founder and “Whoosher-in-Chief,” started the site in 2009, and now has tens of thousands of readers each year from all over the world.
“I still get e-mails sometimes about underlying causes that I have not heard of before,” Greenwood said. “I post what I learn, with links to medical journal articles and other resources written by medical professionals, so that patients may discuss them in more detail with their own doctors. The list of possible causes is very long and crosses over several medical specialties, so there is no specific go-to doctor for a pulsatile tinnitus sufferer, which obviously poses problems for us. I have yet to find an exhaustive list of possible underlying causes of pulsatile tinnitus.”
“Whooshers.com has completely changed everything for me,” Blanchette said. “It changed my life.” Sharing information with pulsatile tinnitus-diagnosed patients on whooshers.com helped Blanchette compile a list of nearly 20 different ailments that, when addressed, have been found to make the whooshing noise go away.
“Now, I have a list to check,” she said.
“Pulsatile tinnitus is a symptom that warrants distinguishable medical care than regular tinnitus,” Greenwood said. “It's important for doctors to recognize this distinction, but too few do. There are many possible underlying causes of pulsatile tinnitus, not all of which can be identified, but it’s very important to rule things out.”
Blanchette briefly lost her job and her health insurance this past winter, and had to stop working on her elimination list until her insurance is reinstated this spring.
“I was so consumed by it for such a long time,” she said. “This winter, I can’t be, so I stopped. It gave me a chance, in a weird way, to stop thinking about it.”
She found a link to an audio file that allows family members to hear sounds similar to what a whoosher hears unceasingly. The link, at http://depts.washington.edu/physdx/audio/vsd.mp3, let Blanchette’s husband and mother hear what she hears. The sound helped them to understand why she needs white noise on in order to concentrate at work, or to fall asleep at night.
“It just brought so much healing,” she said. Some sufferers are suicidal, she said, because they feel helpless.
A voice
Blanchette’s goal to start a non-profit organization for whooshers stems from her own frustrations, and her desire to help fellow pulsatile tinnitus sufferers be diagnosed and, ultimately, cured.
“Never accept ‘You just need to live with it’ as an answer,” Blanchette said. “Get a sixth, seventh, or eighth opinion until you get someone to listen and to help.”
The estimate of 3 percent of 200 million with the condition translates to roughly six million people who hear whooshing, and who need to be properly treated, she said.
“It should be noted that there are many causes of pulsatile tinnitus that are not life-threatening or dangerous,” Greenwood said. “Some are, though, so it’s important to rule those out. More and more whooshers are being treated properly and have found silence again.”
“There’s a support group,” Blanchette said. “People have a voice. You have to be your own advocate.”