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Hearing Disorders Message Board

Hearing Disorders Board Index

First of all---don't admire my fortitude. I have certainly thrown my share of screaming, crying fits. Unfortunately, it is my family (the people I love the most--husband, daughter, 2 sons) that get to see all of that and bear the brunt of it. Like you and everyone else in this "boat"-- I often would find myself avoiding people or going somewhere for fear I would be having a really bad ear day & I could not deal with it and people, too--Now, for your questions...I had to print it out so I could remember it while I type... Maybe Alzheimers is the next phase of this affliction! (not really--and I shouldn't tease or even make jokes--but--sense of humor is critical!) Okay--1.) The roaring sound--I have always called it a sound like the ocean. I have told my husband that I hear the ocean in my ear--and yes, I have found the same as you. It can be relieved by certain "pressure points" or sometimes just shoving cotton in there--but that obstructs hearing--which I don't find nearly as annoying as the "ocean." 2) the fullness...that is a feeling that I don't have all the time--thank goodness. I just would not be able to stand it. I have said it is like I have taken a pitcher of water and filled my ear full to over-flowing--but there is nothing there. When I am like that--I am completely distracted and useless. I had gotten to where I would put my fingers under my nose and sniff--the opposite of blowing--and that would relieve--but not for long...usually until I swallowed again and they popped again--which leads to 3.) Popping for no reason. I used to get a rattle like cellphane paper! I sat straight up in bed one night because it was so loud (to me) and I screamed that I could not do this any more! It scared my husband to death..I told him what I was hearing & asked him to put his ear next to mine to see if he could hear it also--HE COULD!!! I think that was a real wake-up to him as to what I was dealing with.. Fortunately, that has almost totally subsided. The popping is still there every now & then--but I can deal with that also... Now--#4.) That is the one that has just nearly put me over the edge. The sound of my breathing and talking amplified in my ear. I have tried to tell doctors, etc. that I am hearing my voice from the inside--not the outside. Also, it is so loud, that if someone else talks while I am talking, there is no way I will hear them. Same thing with eating or chewing...I cannot hear if I am chewing--especially something crunchy! I also used to really love to sing (not that I am good or anything--but you know, like with the radio, etc.) I have not done that in years--it is so annoying. For some reason, singing is the worst thing of all. Sometimes I really can feel sorry for myself--thinking of all this stuff. I actually will watch people on TV having a good time exercising or something and think, "I wish I could do that--but exercise or being out of breath really messes me up!" I don't say things in conversations because it is just not worth the annoyance to me to talk. I do a lot more listening than talking. Then, I will have some good days--not normal by any means--but days that it is good enough that I think, "hey, I can deal with this! I am going to be okay." I always think, if they can't find a cure...just please let me learn to adjust and not notice it anymore! One thing I have thought know how stuffing something in your ear helps a little of all the symptoms but obstructs hearing? Well, I wondered about one of those small hearing aids? (Vanity went out the window years ago!) If I could put one of those in my ears, maybe it would help the symptoms & I might be able to hear also...Of course, my hearing is nearly gone in that one ear anyway...but the other one--the hearing aid would have to be turned way down..Anyway, it was just a thought. The other day, I actually had all this clear liquid run out of my ear (the one that is new to this) and I was so hopeful that it would be better. It was for a few days. I keep hoping that whatever caused that build-up--it would happen again and I would be okay again... I have an appointment with a surgeon (actually, world-renowned) in Oklahoma City on July 14th. He is the one I started out with years ago...he has developed implants for deaf people, etc...he also did not know much about PET 20 years ago. I took him the information on the catheter surgery myself. I had received it from a very nice surgeon that I wrote to in Los Angelos. Also, now that I know where Dr. Poe is, I know that the Massachusetts Ear & Eye Infirmary is one that I wrote letters to in 1982...I am definitely going to follow up on that--I am taking all the info. I have received from these boards to my doctor in OKC to see what he thinks. I'm afraid this has gotten really long....Well, if you are like me---you won't mind reading because you are "talking" to someone who really knows what you are dealing with and really cares! I do wish you the best of luck, also..and hang in there. Hey! I have about 17 years more experience with this....I do have a question for you you have good days and bad days? I mean is it really unbearable sometimes and then sometimes not?? I hope it is that way for you--I know what those "bad" days can be like! Jane

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