problems with latest new hearing aids & what to do about them.

Reply to Ess77: Roughly 80% of people diagnosed with Meniere's Disease (MD) do not actually have it. However, it is one of only a few codes that docs can use to get compensated by ins., so it gets overused. Further, an exact diagnosis of any inner ear disease is partly damned good guesswork. MD is incurable--that is, you'll have it until you die. There are some related diseases that are "fixable." One discovered fairly recently is MAV (migraine-associated vertigo), which can be treated with standard migraine meds, a far kinder/better diagnosis than MD! You do not need to have head pain to have MAV, not do all people have severe vertigo.

A very fixable disease is sticky platelets...has many of the symptoms of MD but is fixed simply by taking a baby aspirin every day. Literally, the platelets in your blood stick together. Once you've started the baby aspirin, both hearing and balance are relatively normal.

True MD is almost always followed by a program of strict low-salt diet, with Valium to offset crises. This is unfortunate; I've only met one person among all the true Menierians I know who benefitted from this regime. If you're a woman, esp, if you're 40 or older, there's a good possibility you have abnormally low hormone levels; a safe program of HRT (hormone replacement therapy) can actually restore some or all hearing and balance function, if it's started early enough. The safe ratio: 1 part estrogen balanced by 2.5 parts progesterone. The huge fear of cancer was caused by docs prescribing estrogen without any progesterone decades ago. I first became really ill with MD in my mid 40s, after quitting birth control pills (hormones). Initially, I had ever-worse crises every month within a day of the onset of a period, until I was on the bathroom floor in a pool of vomit for hours. Not a pretty sight at all! I lost almost all hearing and balance function in one ear (I started out with unilateral MD, or disease in only one ear), spent four years searching for the correct dosage of HRT. By the time I found the right combo, the loss was permanent. I then went bilateral (both ears) 1.5 years ago, finally found a doc to prescribe HRT 11 months after losing almost all hearing in my hearing ear...and in less than two weeks hearing in that ear returned to the level where it had been prior to going bilateral. I did go to a VRT (vestibular rehab) specialist to brush up on the daily exercises I'd done for over 30 years in order to regain balance function (I'm 78).

There are also cases of MD caused by an allergy. Although inhaled allergens (dust, mold, mildew, pollen) are most likely, some people with MD are okay if they eliminate some particular food from their diet. I know someone who's perfectly okay as long as he stays away from dairy. These allergies or sensitivities (stress, for example) we refer to as TRIGGERS. They don't cause MD but result in really bad days.

Best way to see what might trigger MD is to keep a diary or calendar where you use a color to indicate the kind of day you've had (good, so-so, bad, awful). Then note the smallest things you did/ate/experienced that are not usual for your lifestyle. Over a few weeks you'll probably be able to pinpoint your trigger or triggers. Then the trick is to eliminate them, if possible.

A really important part of living with MD is to do daily VRT. If possible, go to a VRT specialist--a PT with additional special training. What you need to do is to learn to rely on your third balance system, proprioception, or the sum of what all the parts of your body feel, esp. your feet. (Your inner ear is your primary balance system, followed by vision, which you should never rely on because every time you move your head or move about you lose your focal point. Relying on vision is one thing that causes multi-hour V&V crises. (Vertigo and vomiting.)

At this point, I have very little natural balance from my inner ears, but, by practicing and relying on proprioception, I still do very difficult instream work for our state fish & game agency. I hike and wade miles up the wild little river I adopted nearly 30 years ago, entirely by myself, with absolutely no cell phone reception for entire days. I also drive two hours each way once every week to load, on average, 500 loaves of bread donated to our local Backpacks for Kids program...that's about 800 pounds, plucked off trays, loaded into totes, totes loaded and stacked in the van...and then unloaded into freezers and frozen bread from the previous week delivered around our small town. I wouldn't be able to do any of this if I didn't do VRT every stinking day, but the result is well worth it.

@arrowshooter @tonyinmi re: Selecting an Audiologist from Dr Cliff https://drcliffaud.com/providers Because he is so dismayed hard of hearing people are going to audiologists who don't practice best methods, he is establishing a network of audiologists around the country who commit to doing so. A directory to search for them is in this video, as is a tab connecting to a two page summary of "best practices". I'm usually pretty wary of cozy arrangements like this. As I understand it, audiologists pay Dr. Cliff to be part of his network, and the money goes to his producing more informative videos. He defines best practices, audiologists agree to follow them, and he then scrutinizes the way the audiologists administer them when they become part of his network. His reputation is really on the line; and I guess I have more faith in him because of his commitment to getting good care for people than I have in glossy ads in magazines or ads on tv and in the yellow pages. I looked up an audiologist in his network in Pittsburgh, and her credentials are excellent. In fact she worked for four years in the audiology/hearing aid department in the major medical center where I was planning to go. I think I have an audiologist and will be visiting her this summer, along with dropping by Costco. I emailed Mayo Clinic and asked them to send me results for all my hearing tests, since my copies must have gotten lost in the move. I'm really liking Dr. Cliff's other videos and learning more every time I watch one. Thanks Tony for helping me find an audiologist and good information through your link to Dr Cliff. Nancy

PS I misspoke about something in a previous post and would like to correct that, ie there is NO blessing to this virus. I try to find the good in even the worst situations and must admit I have appreciated having time to take Great Courses, watch travel videos of places on my bucket gift I won't be getting to, read, and pursue other interests while I've stayed home. This pandemic and the deaths and suffering it is causing is horrendous....

@ken82 I'm totally deaf in my left ear and cope pretty well with my right ear. I think this concept of cognitive capacity explains something that has perplexed me. I absolutely hate my cell phone (and landline before it) and rarely use it, even though I can hear the person on the other end clearly. I think the reason has to do with this concept of cognitive capacity. I expend so much energy listening to make sure I hear what is being said that there is a lag time while I process that and then respond that makes me uncomfortable. I doubt the person on the other end of the conversation notices it, but I am quite aware of it. I hear so much better and can carry on a conversation with ease when I can see the faces of people speaking to me because I don't have to expend so much energy just to hear them. Does that make sense to you? Thanks for your comment about this. Nancy

Nancy, that makes lots of sense! I've heard that problem referred to as "auditory exhaustion." We used to call watching what people say lip reading, but it's now called "speech reading." It's really watching the speaker for all sorts of visual clues like his/her expression, hand motions, body language, as well as their lips. On top of not being able to see the person, electronic devices like phones have tiny mics that make sound harder to understand. My son, a total tech person, has ordered a headset for me that has a much better (larger) mic; your cell phone may well have a small round hole for a headset of some type.

If your phone has an activated telecoil, you should be able to switch your aid to "phone" to have the conversation inside your ear, via the aid's earpiece. If you haven't tried that, please do. If you don't have an activated telecoil, you need to see the person who fitted your aid.

@ken82 I said this recently (not sure where) so please forgive if this is repetition for you, Ken - or maybe you already explained? Why aren't you using a Caption Call or a Captel phone which could relieve you of the energy you expend in straining to hear?

@nla4625 Yes, it makes perfect sense to me ... The use of Zoom Calls or Skype Calls where you can see the person should be very helpful... at least these video, face time calls need to be planned in advance but try them... I use my remote mic and my right hearing aid for phone calls...on my smart phone ...that's all I have.. Now my only problem with "picture" calls is that I have to get my house in order.. or use a selected background... Let me know if those calls work for you..

100% deaf in my right ear and what you are saying goes for me too. Communication face to face offers so much more in non verbal signals to the content of the conversation.

Lots of us do not have landlines

@barbb Thank you.. I will look into those... Caption Call or Captel phone.. My smart cell phone in the last year works so well with that I rely on that as I traveled ..... before the pandemic.... I have a friend who was a psychoanalyst...and she reminded me of some former clients who were hard of hearing and had somewhat receded from much of their former activity or interaction.. They were quick to reply... and now not so much.. So that kind of role reversal... going from being extroverted... to being withdrawn as an introvert is a waste of what life has to offer.. Damn the torpedoes ..full speed ahead.. hearing all the way.. Ken

@ken82 The staff of my wonderful Mayo family doctor in Rochester, whom I miss terribly, is scheduling a video conference for me to get a second opinion from a Mayo pulmonologist about my lung problem. I'll be loading Zoom on my computer and learning how to use it for that. Hopefully, it's not the malware door it used to be and I'll like it. It will be fun to talk with my great nieces and nephews over it. They are all so tech savvy; and the little ones are growing up so fast. I'd totally forgotten about Skype. Thanks for reminding me. @golden418 -- do you think the cross over type hearing aid you have for single side hearing let's you process and carry on conversations in real time...or when I get one will there be this lag time I experience on the phone of having to take time to process what I hear and then formulate and give a response? Thanks everyone for weighing in on this! Nancy