Hearing Loss: Come introduce yourself and connect with others

Welcome to the Hearing Loss group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with hearing loss, and friends and family supporters. Whether you were born deaf or hard of hearing, experienced hearing loss after birth or with aging, it helps to connect with others. Together we can learn from each other, support one another and share stories about living with hearing loss, coping with challenges and celebrating milestones.

Let’s chat. Why not start by introducing yourself? What is your hearing loss experience? Got a question, tip or story to share?

Interested in more discussions like this? Go to the Hearing Loss Support Group.

@joyces

Julie, thanks for the info. I'm so stupid that I don't understand why the reach can be extended by adding a cord if it's already hardwired to a mic. I'm not buying anything right now, as my supply of hormones that would help me achieve a remission from the return of Meniere's are due to run out in two weeks. Because my primary doc refuses to refill the Rx, that may be the end for me. As it is, the level prescribed isn't quite enough to get a remission, let alone allow me to taper down slowly. So, big struggle right now is to find a way to get another Rx; everything else is small taters right now.

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Why is primary giving hard time - menaires is hard enough to manage- knows a lot of folks with it . Can you go higher up over primary -

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@julieo4

Sorry for your health issues joyces. To further explain the hardwired issue. Everything plugs in to jacks with these accessories. The headsets or neckloop plug in. And, the microphone plugs in. You can add a cord to the device that will extend the microphone via input jack.

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Jack holes have accessories for it I Case you do not have a jack hole- my ohone does there but Apple and other companies have accessory for that

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@jh31251

Not all cell companies offer WIFI calling, who is your company?

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Jon, we have Consumer Cellular. I assume that WiFi works away from here, because I can use Live Transcribe, for which you need WiFi, unless I'm completely crazy. (Which, of course, could be true!)

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@julieo4

Sorry for your health issues joyces. To further explain the hardwired issue. Everything plugs in to jacks with these accessories. The headsets or neckloop plug in. And, the microphone plugs in. You can add a cord to the device that will extend the microphone via input jack.

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Julie, thanks for the info. I've saved that, and your earlier message to go back to, assuming I solve the HRT issue.

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@jh31251

I have much experience with Meneres too, what are your issues with that?

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Jon, sorry that you're a member of this somewhat exclusive club of Menierians! I've probably had Meniere's most of my life. First classic M crisis was over 50 years ago, when I'd gone off birth control pills in order to get pregnant. I had no idea it was Meniere's, resumed the pills in order to stop excessive bleeding. Second classic crisis was in my late 30s, newly divorced...so my then primary doc said, "oh, since you're divorced, you don't need to take birth control pills any more." Found that an interesting comment. <g> Resumed pills again to halt excessive bleeding. During my mid 40s, I was considered too old for pills, and every month for eight months, I had increasingly severe crises each month, within a day of the onset of a period. My primary doc put me on a 3-month test course of birth control pills, and all symptoms disappeared--I could hear and had balance again. Then we began a search for safe but effective types of HRT; spent four years of godawful crisis after crisis, each 12-15 hours, as often as 3X/week. Fished occasionally with an OB/Gyn from Houston, TX (I'm in OR), and he was part of a huge practice that had five women with serious cases of Meniere's; all had benefitted greatly from properly-balance HRT and none had had cancer as a result. He talked to my primary and me, explained the correct ratio of estrogen to progesterone, and I began taking large doses of HRT. After a couple of weeks, no more crises!!! I immediately started doing vestibular rehab (which I've continued for over 30 years) and over time tapered down to a mini dose. Six years ago, camping at high elevation, my good ear began having symptoms; a two-week increase in HRT put the Monster back in the closet.

Not quite a year ago, I went bilateral in a really big way. Initially, it resulted in almost total deafness on bad days, siren-loud T...all hearing issues. Christmas Day, I had the first vertigo crisis...projectile vomiting and loss of bladder and bowel control for a few hours. By a few weeks ago, the crises were happening far more frequently. Two really bad trips, two hours each way, to load bread donated to our local Backpack program, have no made me afraid to drive any distance. I've had to quit my long-standing weekly drives for Backpack and beg off instream surveys that I've done for a project I started almost 30 years--the single most complete set of data anywhere about wild winter steelhead. The slightest head movement brings on a moment of severe vertigo. My current primary doc, survivor of a recent battle with serious breast cancer, gave me a small Rx for 90 days but will not renew it, certainly will not increase it enough to banish the Monster. I only have two weeks left before I need to go cold turkey. The last remission lasted for nearly 30 years and I'm almost 78, so a remission and tapering back down to a mini dose should take care of the rest of my life...but my doc says, "no way."

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@bookysue

Why is primary giving hard time - menaires is hard enough to manage- knows a lot of folks with it . Can you go higher up over primary -

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Bookysue, I live in a very small town. Hard to switch docs during the Covid crisis...and how can I find a doc that would be willing to prescribe HRT for someone my age? My kidney doc (2 hours away) is sympathetic, but can't prescribe HRT, doesn't know anyone who would. Problem with hormones relates back to over 30 years ago, when it was common to prescribe just estrogen, which is often a straight path to breast cancer. I know lots about proper hormone therapy and how it can alleviate Meniere's IF low hormone levels are a person's trigger. I've proved several times over that my abnormally low levels are what triggers Meniere's crises, but most docs won't even listen, just believe HRT isn't for old bats! I'm more than willing to sign a hold-harmless agreement...I have little fear of cancer as Meniere's is terrible hell.

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@jh31251

Google: speedtest.net, hit go and that site with measure your internet speed. I’m checking Samsung phones to see what you need to do there.

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Jon, test reports: 18 ping, 94.11 download, 11.42 upload.

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@joyces

Julie, thanks for the info. I've saved that, and your earlier message to go back to, assuming I solve the HRT issue.

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You're welcome.

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Wow, your internet is really good! That is not the problem. You need a new cell phone carrier. Get T-Mobile Senior Plan, it is $35 per month per line, it includes unlimited everything, plus all taxes and fees, we have two lines and pay a flat $70 per month. They enable WIFI calling, and your Samsung phone has a setting for it, you will then be able to call and text from your house.

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My opinion on the Meneres: I know what I have to do to prevent mine. You know what prevents yours, you have to continue your search for that Dr who will help you, ask your pharmacist for a recommendation of Drs who prescribe it. Contact Mayo and ask them for help. There is someone out there who will help you, you have to find them! I can’t imagine a Dr who wont do it, that is terrible!

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