Blondie Posted April 4, 2013 Share Posted April 4, 2013 Hey friends! I have an odd medical problem. I have pulsatile tinnitus, which is the sound of my heartbeat in my left ear. I've had it for six years. :surrender: Every single heartbeat I have sounds like this: WHOOSH WHOOSH WHOOSH WHOOSH. It's like a baby sonogram, kind of. It's extremely obnoxious, and it's a condition that is rarely understood by medical science. My friend and I are trying to raise enough signatures on a petition to get pulsatile tinnitus its own diagnosis code. Right now, the only coding is for regular tinnitus, which is far different than what we have. Often, PT is vascular in nature and can be a sign of a life-threatening heart problem. We really want to get this code out there for doctors and patients. A few of my whooshing friends have been cured, but I am still waiting. If you would be so willing, I would like to ask that you sign the petition. All you have to do is go HERE. You can also read about this on a blog post I just wrote HERE. I have a lot of friends on this board, so I thought it wouldn't hurt to see if I could gather a few of you to sign the petition. Thank you SO MUCH in advance for signing, or for simply reading this post to help me spread awareness. 2 Quote Link to comment Share on other sites More sharing options...
Patsea Posted April 4, 2013 Share Posted April 4, 2013 Done! So sorry, that is miserable having to live with that. Hope you get the code as well as the cure. 2 Quote Link to comment Share on other sites More sharing options...
Blondie Posted April 4, 2013 Author Share Posted April 4, 2013 Yay!! Thank you!! Every signature helps. Quote Link to comment Share on other sites More sharing options...
woodland_miniatures Posted April 4, 2013 Share Posted April 4, 2013 Also done! I had the misery of having a bout with this condition several years ago, though I didn't know what it was called until just now. mine followed a bout with pneumonia and lasted for months, in my left ear. It was enough to drive a saint mad, the WOOSH WOOSH WOOSH WOOSH. Still have no idea why it stopped as suddenly as it started - THANK GOD! Thank you so much for bringing this up and sharing this information. 1 Quote Link to comment Share on other sites More sharing options...
Chris P. Posted April 4, 2013 Share Posted April 4, 2013 Done and done! I also have tinnitus, only it is a constant high pitched buzz. I also get a weird throbbing of my left ear drum, but it is not my heartbeat. No one has been able to tell me what it is. I totally empathize with you! 1 Quote Link to comment Share on other sites More sharing options...
morgansmith Posted April 4, 2013 Share Posted April 4, 2013 Done. Thanks for making us aware. I was diagnosed with a rare disease in 1975. It saved my life. But it was what they call an orphan disease. My survival was a miracle. We only ever knew of one other person who was living through it. Now, I am one of many because of a wonderful website. So thanks to you for the post and thanks to the internet for giving us this opportunity. Quote Link to comment Share on other sites More sharing options...
gamma Posted April 4, 2013 Share Posted April 4, 2013 am i allowed to sign? i am italian; if "yes" i'll be glad to help Quote Link to comment Share on other sites More sharing options...
Blondie Posted April 5, 2013 Author Share Posted April 5, 2013 There are a few reasons for why people can end up with temporary PT. Women can get it periodically while they are pregnant, due to increased blood flow. You can also get it if you have extra fluid in your eustachian tube in your ear. In that case, taking high doses of Sudafed or another decongestant can cure it. With pregnancy, it will often disappear after the birth of the child. It makes sense, Mary, that you would get it if you had pneumonia. There are blood vessels going right along throughout our ears that can get pushed up against our ear drums. Ugh! Chris, I feel for you with the regular tinnitus. It is horrible as well! And yes, so true about the Internet bringing together people who have all kinds of rare or unknown conditions! It's a blessing. Sergio, I'm not sure if the petition is international, but I'm sure you could give it a try. Thank you all SO MUCH for your support. Quote Link to comment Share on other sites More sharing options...
shaseltine Posted April 5, 2013 Share Posted April 5, 2013 Done Sorry that you are suffering through this and I hope you find relief soon! 1 Quote Link to comment Share on other sites More sharing options...
gamma Posted April 5, 2013 Share Posted April 5, 2013 Done...good luck for your petition Quote Link to comment Share on other sites More sharing options...
New Day Posted April 5, 2013 Share Posted April 5, 2013 Happy to sign. Hope you can find a cure soon. Quote Link to comment Share on other sites More sharing options...
Gonzo Posted April 5, 2013 Share Posted April 5, 2013 Done. More than happy to help. Quote Link to comment Share on other sites More sharing options...
MissElle Posted April 5, 2013 Share Posted April 5, 2013 Done as well. Hope you get all your signatures! Quote Link to comment Share on other sites More sharing options...
Blondie Posted April 5, 2013 Author Share Posted April 5, 2013 Thank you all so much!! Quote Link to comment Share on other sites More sharing options...
Dalesq Posted April 5, 2013 Share Posted April 5, 2013 Done. Quote Link to comment Share on other sites More sharing options...
Creamcheese Posted April 5, 2013 Share Posted April 5, 2013 I just signed the petition! Looks like you've gotten lots of people to sign. Hope you'll soon be feeling lots better. Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted April 5, 2013 Share Posted April 5, 2013 Have you ever been tested for Superior Canal Dehiscence Syndrome? I found out during my trial and tribulations with my mastiod, that I have a thinner skull than normal. About 10% of the population suffers from this. And you can get a hole above your ear that can cause many symptoms and one of those is Pulsatile Tinnitus, I was lucky when it was found out that I only had a very bad infection in my mastoid and not a CSF leak as they were thinking. But I still have to be aware that I could still get a hole in my skull (Tegman`s defect) in the future, I had developed a hole in the bottom of my mastoid from the infection and it caused me to get worse tinnitus then I had ever experienced and I have had it the majority of my life. There is nothing worse then hearing your heartbeat in your ears or you can actually hear yourself blink! I was in the car next to a large 18 wheeler and my tinnitus was mimicking the noise from the truck. Maddening. I am going now to sign your petition. There are some groups on Facebook that deal with this disorder if you think it could be your issue. A couple real simple tests are done in the ENT`s office to rule it out. You have probably already tested for this but it cannot hurt for me to mention this to you just in case you have no idea. I really do empathize with you! Quote Link to comment Share on other sites More sharing options...
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