Hearing Loss: Come introduce yourself and connect with others

Great intel, thanks.

Jon, Although T-Mobile is twice as expensive for two lines, might be worth a try. First, though, I need to determine if my Samsung phone w/telecoil will work on the phone setting. Downloaded the app, tried it a couple of times briefly while I was out, didn't work...but could have been me. Unless my Samsung works on phone setting to deliver sound directly to my ear, it offers nothing better than our cable phone (which isn't much most days).

If I may ask, what's your trigger? For a couple of decades, I moderated an online Meniere's discussion group, and low hormone levels seem to be a more common trigger than most other things. Just curious...I also nagged VEDA into doing what was, at the time, the only book about Meniere's--designed, edited, and enabled it through printing and distribution.

You've offered a world of good info!

Bummer you Are going through this- my primary care is part of a team and I can say something . Why is the doc resisting at this point the meds - weird- I know meiaires is horrific- know folks with it . I wish we can help-

Bookysue, I "get" why my primary doc fears hormones in general, HRT specifically: she had stage 3 breast cancer, double mastectomy, and reconstructive surgery two years ago. She's a real believer in daily exercise, good diet, healthy living in general, walks 2½ miles every day, so that's probably the most serious health challenge she's ever had. Even worse, she went to a surgeon a couple of hours away, the same doc to whom she'd referred many of her patients--and found that he was totally heartless, discharged her before she was well enough to leave the hospital, let alone be driven for two hours and dropped off to care for herself. So, I understand why hormones frighten her, even though I don't agree with anything anywhere near her level of fear. In addition, she's never had a patient with Meniere's, has no idea of the fun it presents! Further, an estimated 80% of the people diagnosed as having Meniere's actually have something else; Meniere's is THE magic diagnostic code for virtually any sort of inner ear disease that enables docs to bill insurance companies. There are very few people who have full blown cases of this damned disease, and far fewer of those that have it in both ears, meaning total deafness and total loss of natural ability to stay upright.

It has proven to help you- communicate with her that you are working on bettering your health as much you can it you need this- And interesting enough It is guys I know who have this- I am a member of HLAA. Never met a woman with it. Pat the guy suffers dizzy spells and disoriented moments- diagnoses after 40. And then 2 other members . Tough thing to have. .

Bookysue: People diagnosed after 40 are likely to actually have Meniere's. It can range from occasional dizzy spells to half days lying wherever you went down with projectile vomiting coupled with loss of bladder and bowel control. Definitely not a pretty sight, nor something to look forward to. At that point, crises are generally 12-15 hours each and can occur as often as three times a week--which means 36-45 hours ripped out of every week!!!

Lots of older people actually have another inner ear disease, BPPV, characterized by brief but violet flashes of vertigo when you move your head suddenly. A doc in Portland, Oregon perfected a maneuver named after him, the Epley Maneuver, that often, at least temporarily, fixes BPPV. I only know of one person with such a severe case that they were prevented from living a normal life.

When I was awfully ill with Meniere's during my mid 40s, it was unilateral, i.e., only affected one ear, and I was able to be super productive following a crisis, worked an average of 60 hours a week managing a publishing company (production, marketing, distribution) and was active outdoors. However, now that it's bilateral (both ears), I'm finding it extremely difficult to function, either in terms of hearing or balance. Further, I KNOW how to get it in remission and am royally frustrated that I haven't yet found a way to get adequate HRT. I do have an appt. with an OB/Gyn next Tuesday, fingers and toes crossed.

Hard one- will hope you get relief with doc appreciation next week. Will keep everything crossed for you. Just curious- Are you a DES daughter. ?

Talk to T-Mobile and have them evaluate your phone and what you need, the others is cheaper, but it doesn’t work so it isn’t even worth what you are spending on it.

As far as Meneres, my trigger is excess sodium and fluid retention. At 24 a Dr diagnosed it as nervous stomach, so for 15 years I was wondering what I was nervous about. Then I had a spell and ended in an emergency room, and the Dr said, “Follow my finger with your eyes, then he said follow my finger with your head.” “I said I can’t!” He said, “You have Meneres Disease!” From then on I had more diagnosis and got on Meclazine. I finally also pinned the spells on the sodium, I’ve had it under control for many years without and medication, just very low sodium intake under 1000 mg a day.

Jon,
Interesting, in that docs always tell us to limit salt, but not too many Menierians find that to be the key. There definitely is some fluid retention, and some of us believe that exercise, real exercise that makes you sweat, may remove some of the excess fluid from our inner ears. 30 years ago, I played coed basketball once I got headed toward a remission, and I always felt better after playing. I'm sure that some of the reason was I was pleased that I had made the effort to do a normal thing. I've been on a low-salt diet since my early 20s due to congenital high BP. The ENT who first diagnosed me told me that a couple of slices of pizza would definitely bring on a crisis, but that wasn't true. On the rare occasions when I've had real salt, it made no difference as far as the Meniere's was concerned. I also got allergies to mold and mildew treated. Didn't help the Meniere's at all, but it does make it possible for me to work in flowerbeds or in a place that has mold/mildew (i.e., garage...living on the coast as we do) without needing antihistimines.

The doc who diagnosed me patted me on the hand and said, "Now, now, Dearie, just quit your silly job, stay in bed, and take Valium." None of the various meds like Valium or meclizine worked for me, just made me dopey, drugged. Many of us believe that, because the disease is so difficult to diagnose and is really a process of elimination rather than an "aha," that it may actually me a cluster of inner ear diseases with a common label hung on them.

Here is the approach I’d take with your Dr. - I have, according to actuarial tables, 10 years left on this earth. Now, I know my 78 year old body very well and I know what I need to make it work. HTR is a must to live my final 10 years to the fullest, so I am asking you to renew my prescription. If you do not you are sentencing me to 10 yrs of Menieres Hell, where I will have vertigo crisis…projectile vomiting and loss of bladder and bowel control for a few hours and the slightest head movement brings on a moment of severe vertigo. These come on without warning anytime of the day or night. There is nothing negative from the HTR that compares with the Menieres, I will take my chances just to get the relief!

If your Dr still refuses she really isn’t human!