A Whoosher's Story about Fibromuscular Dysplasia: Watch "Mystery Diagnosis," Mon. Sept. 7th @10pm
There are many causes of pulsatile tinnitus, but some whooshers have been diagnosed with a disease called fibromuscular
dysplasia (FMD). You can learn more about FMD in an article and video posted in the "Resources" section of
this site, and even more information at The Fibromuscular Dysplasia Society of America.
On Monday, September 7, 2009, at 10pm EST, FMD will be higlighted on the television show, "Mystery Diagnosis," which airs on the Discovery Health channel. The FMD story will air on the second half
of the show. Check your local listings for the correct time and channel in your area. Don't miss it!
This post is dedicated to a fellow whoosher who recently wrote in to firstname.lastname@example.org. I'll call him Steve. Steve has been a pulsatile tinnitus sufferer for 10 years. Like many of you, he is
What I first found compelling about our email conversation was that Steve and
I may not have much in common besides the whoosh.For example, he is a man in his fifties; I am a woman
in my thirties.But, as he described to me how his life continues to be affected by pulsatile tinnitus,
I understood him and his pain. The whoosh has made everything more difficult: Work.Marriage.
Enjoying the simple things in life.It has created isolation.After 10 years of seeking
answers, sustaining the hope that the cause of his pulsatile tinnitus will ever be found and cured has taken a toll on Steve.
My email exchange with Steve inspired me.I think he is stronger than he thinks he is.
him if it would be okay to post an excerpt from his initial email to Whooshers.com, and he agreed. Whether you are a new whoosher
or you have been whooshing for years or even decades, you’ll appreciate some of the feelings Steve describes.
I want to thank you for writing us. You’re not alone. There are a lot of us out there.
Like you, we all try to make light of the difficulties the whoosh creates but we know it's not easy. We all have worries,
doubts, and many of us have frustrating paths (and medical bills) to recovery.It is unfair to you that
your path to recovery has been so long. It's alright to complain, to express your concerns and anxiety.
reading this and you have been whooshing as long as Steve or even longer, please let us know how you’re doing.As a pulsatile tinnitus sufferer myself, I believe that sharing our stories is a big step towards recovery. You
can post comments directly under each post on this site by clicking on the "Comments" link, or you can email email@example.com in confidence. Your email will not be posted without your permission.
We can learn from each other, new and experienced
whooshers alike.Whooshers.com appreciates all the emails and comments so far.
keep them coming.
Listened to all
the sounds on your website still nothing close, maybe I’m looking at Whooshers wrong but I can’t find much from
other sufferers of PT. I’m 56, had this for about 10 years and like you have had all the tests and bloodworks, a couple
of times. Supposedly had the best in the country look at me and none see anything wrong. I do wish someone else could hear
this. Mine has a few twists like I actually hear so much better than other people, but whenever I talk, people always say,
What! Like I’m not talking loud enough. Strange, I repeat myself so much it’s beginning to bother me.
Unlike your PT I can’t shut mine off for a second
with a vein (pressing on the jugular), but I can duplicate the sound in my head by moving my jaw left or right.
Told the DR’s this, nothing, they can’t
hear it with a stethoscope so I’m sure they think I’m faking it. I’m not a blogger or a tweeterer but I
don’t think I could even if I wanted to, my interest in things has been gone for years. Exercise is a thing of the past,
I even tried yoga but it still got my heart rate up and then everything flies right out the window. My marriage has been in
the tubes for years now, she thinks I’m just feeling sorry for myself, I am down all the time, so I
guess it’s not her fault, she’s sick of hearing about it so I just never say anything about it anymore.
Why I’m saying all this to you I have no idea.
I know I don’t like listening to other people’s problems that’s why I just keep this to myself all the time.
My family Dr’s no help, he’s got me on a few meds to at least help me sleep or I really am a bear the next day.
Again sorry for this, I’m just venting, sometimes I wish it were some honking tumor at least there would be some chance
of relieving this noise. Funny there’s no pain involved but it’s getting harder and harder to go on. I could go
on for pages about this but I’m done. Sorry to bother you.
It's difficult to describe a sound that no one else can hear,
right? Finding an audio file to play for others can be a helpful way to convey what you're hearing.
what I can tell online and from my conversations with other whooshers, there may be many different kinds of whooshing sounds.
Mine sounds very much like a heart murmur. This is coincidental because I don't have a heart murmur.
I've talked to several other whooshers, some
who say their whooshes sound like wind blowing in their ear or like the sound a baby sonogram makes. Other whooshers
hear a sound like a washing machine or like the air blowing through a car window that is opened just a teeny tiny bit when
driving fast (How about THAT for a description! I'd love to find audio of this washing machine and open car window!).
Some whooshes sound more like sWOOSH--sWOOSH. Others are more like SWOOOOOOOSH SWOOOOOOOSH.
people may hear a completely different kind of sound than those described above. That's what we'd like to survey.
Also, if we can compile a nice selection of whooshing noises, we'll be able to discuss them here, and we may be able to see
how common certain kinds of whooshing noises are compared to others.
When I shared the audio file of the
whoosh that sounds very much like mine with friends and family, the reactions were like, "You hear THAT? ALL THE
TIME?" I had been describing the sound to them for months, but it wasn't until they HEARD it that they truly understood.
There are links to audio files of venous hums, bruits and other whoosh-like sounds that can be found online. We'd like to find YOUR whooshing sound and post a link to it so others can hear it, too.
Just letting us know, by an anonymous post on this site, that none or one of these files is like your whoosh would be a tremendous
If you do some searching and find a link to an audio file that sounds like your whoosh, would you please post
it or send an email to firstname.lastname@example.org? If you're interested in finding your whooshing sound but need some help, you can post a description of your whoosh
here and ask others to help find some audio files online. And don't forget to find the earlier post on this site where
you can tell us where you're from and how long you have been whooshing (anonymously, if you please, of course!).
UPDATE: Just found a link to more sounds. Do any of these sound like your whoosh?