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echo77

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Ok so back in March my PCP thought I had menierre's disease (sorry if I spelled it wrong). In April I saw the audiologist and she said that my hearing was below average. That I had some loss in my right ear, and more in my left ear. She also said that I can hear words just fine, but that I need it louder. She said that I have Eustachian Tube Dysfunction and that I need to see an ENT. Well finally I get to see the ENT next week. I had a phone call about a month back and I thought that the person on the other end said Safe Debt, when she actually said Safe Step (as in the tubs). That is not my first time hearing something else. Tuesday night a friend gave me a hug and her cheek was up against my right ear. Closing it up. She started talking but all I could hear was her mumbled voice. I could not make out any words at all. Any thoughts on why that is?? Thanks!!
 
Echo77, that all sounds so familiar. I have more loss in my right than left, my ENT had me get an MRI to rule out a tumor. She wasn't able to determine a cause, listed a bunch of things it could be, including Meniere's, but there's no official diagnosis (this seems relatively common).

Some tricks I've learned are to place people on my left, try to control the environment as much as possible to optimize my ability to hear. I always answer the phone with my left (I can't even hear that someone is talking if I accidentally answer with my right anymore).

If increased volume helps you, like your Aud said, you should be able to get hearing aids (HA). You should inquire about it if you're finding it difficult to communicate sometimes. It seems some audiologists/ENTs won't push for HAs and you have to ask. Seems more common at hospitals and such rather than a HA distributor from what I've gathered, but it probably depends on the personal beliefs of the given doctor/audiologist.
 
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Hi thanks for responding. I see my ENT next week, and I know I have a lot to tell them. But, once I get in a room I totally get "white coat" syndrome and freeze up. Do you have any suggestions on what I should bring up. I'm going to try to bring up the issue that I had the other night with my friend. Plus the phone thing, but like you said audiologists/ENTs aren't pushing for HA's anymore. In my other posts, I mention the tinnitus, vertigo issues, plus the dizziness. I'm not sure I mentioned that I stopped playing musical instruments, I stopped singing etc. because of this crazy hearing issue. The Audiologist that I saw mentioned getting tubes in my ears. But from other people I have spoken with they have said that it is a bad idea. I just don't know what is going on.
 
Before you go to see the ENT, you should write down all of the questions and observations that you have. If you do this, you will have something to rely on when you feel the "white coat" syndrome. You can even tell the ENT that you wrote stuff down and you want responses to the things on your list.

If you have until next week, just write stuff down as you think of it. Also, if your ENT doesn't mind, ask for his/her email address so that if you think of more things once you get home, you have a means of communication with the ENT so that your questions can be answered.
 
MMcC- I have written down my questions in the past for my other specialists, but no one seems to pay attention to them. Nic- I do use my right ear for everything and try to place myself (if in a room of people) where the most talkative person would be on my right side. I have gotten to the point where I put a sign on the door that says Please ring the door bell. I have a hard time hearing the door being knocked. But if someone rings the doorbell my dog will bark.
 
echo77 said:
Hi thanks for responding. I see my ENT next week, and I know I have a lot to tell them. But, once I get in a room I totally get "white coat" syndrome and freeze up. Do you have any suggestions on what I should bring up. I'm going to try to bring up the issue that I had the other night with my friend. Plus the phone thing, but like you said audiologists/ENTs aren't pushing for HA's anymore. In my other posts, I mention the tinnitus, vertigo issues, plus the dizziness. I'm not sure I mentioned that I stopped playing musical instruments, I stopped singing etc. because of this crazy hearing issue. The Audiologist that I saw mentioned getting tubes in my ears. But from other people I have spoken with they have said that it is a bad idea. I just don't know what is going on.
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I have the same problem, totally blank on what I was going to say. I've started writing a list of things (questions, complaints, problems, etc) and just reading them off to doctors. It works a lot better than trying to remember all the things I was supposed to ask about or tell them about. It also sort of forces me to "complain" a bit about things, which is what we're supposed to do with doctors. Typically I'm a non-complainer and just cope and sometimes when the doc comes in I go into the "You don't want to hear about my problems" type mentality.

I would tell the docs that you stopped playing music, have difficulty communicating on the phone, and in person, etc. And say it's affecting your quality of life. Then say you're interested in exploring HAs as an option to get some of that back.

Edit: And now that I read the other posts, I see MMcC gave the same advice. I'd add that specifically asking about alternative methods (from what they've already offered) to get back some hearing and improve your quality of life they can offer. Then specifically bring up HAs if they don't.
 
stay in standing position put your hand out shake his then sit down but make sure you the one looking down direct into his eye it a psychological thing and it works you get the respect and in driving position
 
caz said:
stay in standing position put your hand out shake his then sit down but make sure you the one looking down direct into his eye it a psychological thing and it works you get the respect and in driving position
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That's solid advice for any situation where people get nervous one on one.

For me, the doctor office thing, it's more about not complaining and simply forgetting to mention the thing I wanted to ask about (whatever it is at the time). My primary care doc, I like her, she's easy to talk to and everything, but I still don't mention things sometimes. Sometimes I just honestly forget in the moment, other times I shrug it off as not that important, not worth her time, and then later wonder if I should regret it or not. Which is why I started writing things down.

For my hearing appointments, it was all super new for me, and the first couple appointments, I just didn't even know what to ask, what I wanted to know... I felt pretty lost after them. Some docs are better than others when overwhelming a patient with new information. Subsequent conversations with the docs have been better. I have a -lot- more knowledge now.
 
echo77 said:
MMcC- I have written down my questions in the past for my other specialists, but no one seems to pay attention to them. Nic- I do use my right ear for everything and try to place myself (if in a room of people) where the most talkative person would be on my right side. I have gotten to the point where I put a sign on the door that says Please ring the door bell. I have a hard time hearing the door being knocked. But if someone rings the doorbell my dog will bark.
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Don't leave your doctors office or in this case the ENT's without him/her answering ALL OF YOUR QUESTIONS! If they get up to leave tell them they haven't answered you question or questions. One thing I have learned over the years, especially with ENT's, is they tend to practice what I call dart board medicine: they basically throw a dart in the medical book and come up with an answer that might change with a later visit.
 
take the written notes in with you..sit down tonight and write every little thing out...she after all is being paid to listen to you
 
Thanks everyone. I do go in to the room and just feel inferior, and so I forget what I need to say because of that. I am only 4'10 in height so I'm always looking up at people. I like my Primary Doc, she teases me a lot. Such as I've been with her for 2 years now and in the beginning I told her she was going to think I was crazy because I had all these issues going on. At first she would send me to one place after another to have all these tests done. Finally after having an endoscopy it came back that I have something called Eosinophilic Esophagitis. She had no clue what that was and had to look it up in front of me. Anyways, I had to have allergy testing done because of it. The day of those results, I'm sitting in the room and she opens the door ever so slightly. She pokes her head in the room and says. "Can I come in? You are not going to kick me are you?" I was very confused. What was she talking about. She comes in and says so the blood work came saying that "You are allergic to EhVEREETHING!" Sure enough I am. I can have steel cut oats and certain brands of applesauce. But that's IT!! Still though I don't tell her everything that is going on with me. Last time I was with her she said my symptoms were all so vague.
 
So I saw the ENT. He said that he could put tubes in my eardrums, but that it probably would not get rid of the vertigo or the tinnitus. It would get rid of the feeling of fullness I have in my ears though. So I told him I would think about it. Everytime anyone goes in for surgery we have the risk of dying. BUT because I am allergic to the drugs to be put to sleep even a light sedation my risk of having an ANAPHYLACTIC reaction is 100% yeah no thank you!
 
echo77 said:
So I saw the ENT. He said that he could put tubes in my eardrums, but that it probably would not get rid of the vertigo or the tinnitus. It would get rid of the feeling of fullness I have in my ears though. So I told him I would think about it. Everytime anyone goes in for surgery we have the risk of dying. BUT because I am allergic to the drugs to be put to sleep even a light sedation my risk of having an ANAPHYLACTIC reaction is 100% yeah no thank you!
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Anaphylaxis is no fun, but when safer to experience it than under the care of doctors? They do allergy challenges to determine allergens still and anaphylaxis happens.

When I was tested (after self-identifying my trigger) they started with a blood test and told me if the blood test came back negative we'd do a challenge (basically eat the food that makes me turn bright red, vomit, swell up, have trouble breathing, get all light headed, and have a pretty crappy rest of the day). I was happy when the blood test came back with high IgE numbers. Doctor was surprised that I self identified accurately after only having 2 reactions (with 6 years between them). I've always been a picky eater though, and I don't introduce lots of new foods at once, it was rigged in my favor and he didn't realize.

*member of the epipen club*

Protip: if you need an epipen and live in the US, you can get a coupon online that covers $100 of your copay cost. https://www.activatethecard.com/epipen/
 
Reba said:
:wave: I'm a member of Epipen club, too.
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We're so lucky :-D

Mine is pine nuts, apparently rare. Luckily usually easily avoided and not something I would say feel sad that I can't eat. It's pesto that sneaks into things though... freaking pesto... What's worse is sometimes it's ok because it can be made with pine nuts, but isn't always... ugh.

The last one that got me was some pesto in couscous and the flipping menu said nothing of pesto... rabble rabble... Didn't see that one coming, but knew it was after about my third bite.

There also don't seem to be requirements to label things with pinenuts in them like there is for peanuts and treenuts and dairy, etc.
 
Nic said:
We're so lucky :-D

Mine is pine nuts, apparently rare. Luckily usually easily avoided and not something I would say feel sad that I can't eat. It's pesto that sneaks into things though... freaking pesto... What's worse is sometimes it's ok because it can be made with pine nuts, but isn't always... ugh.

The last one that got me was some pesto in couscous and the flipping menu said nothing of pesto... rabble rabble... Didn't see that one coming, but knew it was after about my third bite.

There also don't seem to be requirements to label things with pinenuts in them like there is for peanuts and treenuts and dairy, etc.
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:(
 
I'm allergic to grapes (grape seed). That was found out when I was a teenager. It causes my throat to swell up for hours so I cough non stop, but I've never needed an epi shot. I keep careful watch over what others bring over for food. Only once have I had to go to the hospital. At that visit they gave me some kind of cortisone shot, I don't remember exactly what it was as that was about 15 years ago. We think it came from some deli food we picked up that wasn't supposed to have grapes in it, but probably did.
 
AlleyCat said:
I'm allergic to grapes (grape seed). That was found out when I was a teenager. It causes my throat to swell up for hours so I cough non stop, but I've never needed an epi shot. I keep careful watch over what others bring over for food. Only once have I had to go to the hospital. At that visit they gave me some kind of cortisone shot, I don't remember exactly what it was as that was about 15 years ago. We think it came from some deli food we picked up that wasn't supposed to have grapes in it, but probably did.
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Yikes grape seed oil is getting popular as one of those trendy healthier options I think. That's also probably another one if those unlabeled ones too I would think.

With anaphylaxis my doctor told me the reaction can vary and be more severe one time even though in the past it wasn't too bad. I haven't used an epipen yet, been extra careful since the last reaction. He subscribed the epipen as a safety measure. It's apparently safe to use without lasting side effects. Only downside is the cost.
 
Yeah, I'm extremely cautious as to what things I pick up, as far as grapes go, even when a grape-flavored item or drink says "artificial flavoring". I have no way of knowing whether there is even the slightest bit of grape seed in it. I had a full allergy test as a teenager and that's how they found that out.
 
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