Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 Helen, Do many people with CMT have the ringing? Stan Giles Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 My ears started ring on June 28th of this year and haven't stopped since. Bob in Indy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 When I saw all the posts about ears/ringing, it made me think about myself. I also have ringing in my ears(actually sounds like the ocean--when you listen to the sound in a shell) but it has always seemed to be there that I never thought much about it--I guess I never realized it wasn't " normal " , that everyone else didn't have the same thing going on with their ears also. Interesting! Sharon http://www.cmtworld.org http://www.aicmt.org/america.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 I find this absolutely stunning! I've had ringing in my ears all my life and NEVER knew it had anything to do with CMT! I'm glad I found you guys What a wealth of information! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Just to remind you we are all different in our CMT. I, for one, do not have, nor have I ever had ringing in my ears. ~ G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 Gretchen, In many ways you have been extremely fortunate with your presentation of CMT. ap Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Candy, I also get ringing in my right ear. Sometimes it is bad and sometimes it is not so bad. I have Type 1A. I never thought is was CMT but who knows. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Candy and others....... I have Type 1B and I get ringing in the ears - have it right now. Seem to have it more and more with fewer " free " periods in between. Interesting. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 I have no idea what type of CMT I have but I have had the ringing a long time. It started out as the note F on a musical scale but in the last year it has lowered to a E flat. Hey I am a musical person and I had fun figuring these things out,. I gave me something to do with the sound. haha Keep smiling it makes people wonder what you have been up to. Cathleen in Arkansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 , yes my left ear has such an high pitch ringing that i find very annoying and stressful,ive also notice that when im under alot of stress or my blood pressure is up (due to my pain index )that my other ear will ring and when this happens it blocks what hearing i have left. at this time im recieving magazines from the american tinninitis association and they have 800 numbers that my dr.can call to set me up wt an specialist. so im going to look into this at my next dr.appt which is later on this month.. Candy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 I have experienced problems with my hearing lately. Almost as if my ear is plugged with wax or I have water in my ears. After a hearing test and exam the doctor said it was probably tinnitus and I would learn to live with it (easy for him to say)! But he suggested trying a nasal which is an anti-inflammatory, this has worked really well and I haven't had the problem since. If you are interested I will find the name of the medication. Warmest Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 I get ringing in ears too. I was confirmed last week by my neurologist that i most likely have CMT type 1b. I also have dizzy spells and i was told yesterday to give up driving my car and im only 42!! Will Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 , sounds good. If you could pass on the information I will give it a try. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 June, I have CMT 1A and the ringing in my left ear never lets up only when I take an daily nap or sleeping at night I don't hear it. My ear specialist says I have to live with it and this I find dissapointing. So if someone knows of an medication that can help please let me know. Candy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2005 Report Share Posted January 21, 2005 Hi , The prescription medication Nasal Spray is Beclomethasone dipropionate aqueous suspension. Quite a mouthful.I am giving you exactly what is written on the label. It has worked for me so far. I just use one spray in each nostril before bedtime. Good Luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 Wonderful. I will take it to my doctor. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 Candy - mine is mostly in the left ear also - my constant " white noise " . Sometimes it is worse than other times - I mind it mostly when everything is quiet and I am trying to rest or sleep. I go to sleep easily but I always hear it worse then. Right now I am watching TV and have this constant noise in my ear, as always, so I just kind of got used to it. Told the Dr. about it and he just said, like usual, Ummmmmmmm. I have CMT type 1B. Don't know what to do for it but I am reading with interest the post about the nasal spray before bed. June __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2010 Report Share Posted January 29, 2010 Had ringing for 8 years now....have hyperacusis too after I was exposed to mold. One option is to go through Tinnitus Retraining Therapy. I did this and it got worse. However, I am also a category 4 patient with severe hyperacusis - so I knew there was a chance it would get worse. I believe there is a pretty good chance for it improving if it is just tinnitus. Here is a list of practitioners on the Hyperacusis Website. Although you don't have hyperacusis - most people with hyperacusis also have tinnitus - so they deal with both issues. _http://www.hyperacusis.net/http://www.hyperacusis.net/<WBhttp://www._ (http://www.hyperacusis.net/hyperacusis/trt+sound+therapy/default.asp) Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2010 Report Share Posted January 29, 2010 sorry, I dont know if it ever completely goes away, mine comes and goes. > > Hello all! > Did any one else get ringing in the ears from toxic mold exposure? I was exposed to stachy for approx 1.5 years. I still cant get rid of the ringing. Any suggestions on how to get rid of it? > Thanks in advance. > Elias > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2010 Report Share Posted January 29, 2010 It's called tinnitus and I've got it bad. I was watching tv the other day and there was a commercial about some medication that's supposed to cure it but beings it not life threating and I dont want to put any more pharmaceuticals in my system than I absolutely have to I just live with it. If it's that bothersome google " tinnitus " and Im sure you'll find the med(s) Im referring to. Sorry, wish I could be of more help Dave > > > > Hello all! > > Did any one else get ringing in the ears from toxic mold exposure? I was exposed to stachy for approx 1.5 years. I still cant get rid of the ringing. Any suggestions on how to get rid of it? > > Thanks in advance. > > Elias > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Hi- I have ringing in the ears also. I was able to get rid of it completely by taking a vitamin product called Lipoflavinoid. It is rather expensive and you need to take as many as are recommended but it did work. I think it was three pills daily. I can't afford it right now so I just live with the ringing. I do not receive any financial incentive to recommend this product. I did see it in Walmart for less than it cost me when my pharmacy had to order it special for me. Take care, > > Had ringing for 8 years now....have hyperacusis too after I was exposed to > mold. > > One option is to go through Tinnitus Retraining Therapy. I did this and > it got worse. However, I am also a category 4 patient with severe > hyperacusis - so I knew there was a chance it would get worse. I believe there is a > pretty good chance for it improving if it is just tinnitus. > > Here is a list of practitioners on the Hyperacusis Website. Although you > don't have hyperacusis - most people with hyperacusis also have tinnitus - > so they deal with both issues. > > _http://www.hyperacusis.net/http://www.hyperacusis.net/<WBhttp://www._ > (http://www.hyperacusis.net/hyperacusis/trt+sound+therapy/default.asp) > > Take care. > > > Quote Link to comment Share on other sites More sharing options...
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