Hearing Loss: Come introduce yourself and connect with others

The Osia system is a bone conduction implant with a processor attached via magnet sgainst the bone on the head outside of cochlea. It bypasses the external and inner ear. Research BAHA and Cochlear Osia implants.

It is considered a prosthetic device as opposed to a hearing aid Keep in mind hat I was completely deaf in my right ear, and could not hear even eith a hearing aid. I am not sure how profound your hearing loss is. It may be that you are not a good candidate for this device, but it is not a cochlear implant. Only an ENT can tell for sure. I only know that one ENT indicated nothing could be done, and another had a solution. I would never presume to question a practicing ENT specialist. Sometimes, though it does not hurt to get a second opinion. I was developing a really poor quality of life that would have ultimately shortened my lifespan.

Hello, I've just joined this forum. I have a new diagnosis of Meniere's Disease. My first incident was in 2007 or 2008, with fullness, tinnitus and hearing loss in my left ear, and some mild dizziness. I had a course of steroids and it went away but then came right back, and they wouldn't let me have another course in case it damaged my liver, so I have profound hearing loss in that ear. I did all right with one ear for quite some time. Last year I got some cold air in my right ear and the same symptoms flared up; I took a couple courses of oral prednisone, which didn't work, and then got steroid shots in the eardrum, which did. I did a pretty good job of protecting my ear from drafts up until August, when it was so hot I sat too long by a fan. Now I have another flareup of hearing loss, fullness, fluid buildup, sound distortion, and tinnitus in the right ear. I've had a course of prednisone, which helped with the fluid behind the eardrum, and 2 out of 3 steroid shots in the eardrum, but I'm terrified they won't work and my good ear is permanently damaged. I am very stressed about this, as I can't hear my roommate when she talks to me from another room, I can't hear my cats purr unless they're right by my head, I'm having trouble hearing calls and Skype for work...and the worst part is I'd been so happy and in love with life because a cancer scare in March turned out benign and I'd recovered excellently from that surgery. Now I'm right back in the pit of fear and anxiety I thought I'd left behind. Thanks for listening, I appreciate it.

First, know that many people are misdiagnosed with Meniere's...it's not only extremely difficult to diagnose, but there's a code docs can use to get paid if you have Meniere's, so they use it. About 15 years ago, MAV (migraine-associated vertigo) was "discovered." Same symptoms, but it can be totally relieved with some migraine meds--not a cure, but a total relief of the hearing loss, tinnitus, etc. Unfortunately, most ENTs don't have the additional training necessary to diagnose correctly, so you need to see a neurotologist (ENT with lots of additional learning). One person I know, who had been diagnosed with Meniere's, actually had, no kidding, "sticky platelets." Daily doses of low-strength aspirin totally "cured" him.

The first thing to do when you have Meniere's problems is to maintain a diary: color each day with a color that shows the kind of day you had (good, poor, bad, godawful) AND lists even the smallest things that were different. These are things that trigger bad episodes of Meniere's. Triggers can be a variety of things: something in your diet (dairy for some), stress, lack of rest, weather, altitude...lots of things. If you've had a really bad day and ate something you don't ordinarily eat, that could be a trigger. This is a long process buy well worth it!

If you're a woman mid-40s or older, please consider low hormone levels as a trigger!!! Only one study has been done (in China), but there are many of us who are living far better lives thanks to hormones. It was obvious when I was in my mid-40s and quit taking birth control pills that there was a connection with hormones as I had increasingly bad spells of Meniere's within a day of the onset of each period; finding the safe mix of hormones was far harder, took four years of experimentation with "safe" things that weren't strong enough to work. I sometimes fished with an OB/Gyn from Texas, where use of replacement hormones is far more common than in the NW, and he gave me the correct formula: 2½ times as much progesterone as estrogen. (Estrogen alone causes cancer, is really responsible for lots of doc's fear of prescribing hormone replacement for "mature" women.) I took strong doses of hormones twice a day for years, gradually tapering down...for 35 years. Then I went bilateral May 24, 2019, 6:45 p.m. For a year, I tried to find a doc in this small town willing to prescribe hormones; I was functionally totally deaf, as my right ear had heard almost nothing for 35 years, and going bilateral meant that my left ear, which already had age-related deafness, was almost as useless.

I finally found a young OB/Gyn who confessed she knew absolutely nothing about hormone replacement but was willing to prescribe what I knew I needed. By this time, I was not only functionally deaf but having daily periods where I was forced to lie without moving, eyes closed, vomiting, for hours. Within two weeks of starting hormones, not only did the crises stop, but hearing in my left ear returned to the level it had had prior to going bilateral! I could hear some birds again, the dishwasher running, even tell when the car's engine was on! Magic!

Once you get the damned disease under control, you need to work with a vestibular therapist on VRT (vestibular rehab therapy). Unlike most exercise, it's not vigorous, just teaches you to use your third balance system, proprioception (the sensations you feet can tell you about). You'll need to do some VRT every day, forever--but it's well worth the small effort and little time involved. Lots of VRT can be worked into your daily routine. For example. I need to walk with my eyes closed every day: I do that on the quarter-mile walk to my mailbox, concentrating on how the gravel surface feels underfoot. I also do other exercises, most of them just part of my daily life. Although I was told nearly 40 years ago, "Just quit your silly job, stay in bed, and take Valium," thanks to VRT I'm now 79 and far, far more active than most people my age. I still do instream data collection for our state fisheries agency as a volunteer; Monday I hiked and waded over 7 miles to retrieve temperature monitors I'd place in the river in late May--the distance covered was rough country without a real trail, just bushwhacking and wading the upper half mile. Since I now have no natural balance on either side, everything I do is thanks to using proprioception 100% of the time.

Welcome to the hearing loss forum at MCC. Many people have shared their experiences with Meniere's Disease. It seems to affect people differently, thus helping methods also vary. I personally know people who have had successful cochlear implants after becoming profoundly hearing impaired due to Meniere's. The CIs have helped a great deal with the Meniere's symptoms. Again, it is an individual thing. Please don't feel there is no hope for better hearing even if your hearing loss becomes more profound. There IS help available.

You may find some helpful information on the website of the Hearing Loss Assn. of America Inc. (HLAA). This organization is consumer based so a great deal of information comes from people who have experience with different issues related to hearing loss. https://www.hearingloss.org/?s=Meniere%27s+Disease

I will look into seeing a neurotologist, thank you for that info. I'm scheduled for an MRI at the end of the month. I also have an appointment with an immunologist, but that's months away, unfortunately. Since I have very little vertigo I do wonder about the diagnosis, but I will have to plug away and see what I can figure out.

The MRI will rule out an acoustic neuroma. As my doc said after I had the MRI, "Just as we suspected, we found nothing in your head." <g>

Hearing loss is usually the initial problem...vertigo is a "fun" addition. However, it is strange that you have little or no vertigo, as serious hearing loss usually means that by then you've developed at least some vertigo. I was surprised to regain some hearing after being deaf for a year, but I'm not surprised that I didn't gain any when I first turned things around with adequate doses of hormones after four years of not hearing on one side. Another thing to note is that Meniere's hearing loss generally includes two additional things: recruitment (sharp loud sounds are horribly magnified, to the point of being painful) and distortion (you can hear that someone's speaking but cannot understand anything). Both of those were greatly reduced once I got on a good HRT (hormone replacement therapy) program. I even have an appt. for a new hearing test next month to see if there's some possibility that, now that recruitment is far less, I might be able to wear an aid in my useless ear and enhance what I hear.

There really is no way that a doc can look at anything and say definitely that you do (or do not) have Meniere's. It's not like a broken bone, where the X-ray says everything and the course of treatment is obvious. On top of that, there is no cure or treatment for Meniere's, other than maintaining a diary to figure out what triggers bad days or, worse, crises. In my case, although low hormone levels were the trigger, many times I didn't know why I was having an even worse day than usual. When your primary balance function (inner ear) goes bad, you tend to use your eyes (second balance system). That, however, is very bad because every time you move or move your head, you change your focal point, lose track of where you are in space. That's why it's so very important to learn to use proprioception, regardless of what's causing the vertigo or what we refer to as "V and V" (vertigo and vomiting). I've made and heard every bad joke about puking!!!! At the worst, you can have crises that each last as long as 12 hours or more, up to three times a week. Let me tell you, that's not a place you ever want to be! Been there, worked through it for four years, wasn't any fun at all. That was before I learned about VRT, which is how I pretend to be normal. I feel that I've done really well, in spite of the damned disease, as I'm far more active than many people 20 years younger--all due to daily VRT.

OK, it's going to actually rain here tomorrow, so I have to go out and clean gutters, which isn't something you'd expect someone with Meniere's to do. The good thing is that the challenge to my vestibular system will mean I have improved balance for the next 2-3 days.

I am wondering if it's autoimmune inner ear disease rather than Meniere's, and plan to ask the ENT about it when I see him on Tuesday, see how receptive he is. One good thing, I found out that anxiety and insomnia are side effects of the medication I'm getting, so when the injections are done my mental health may improve.

In response to @sistercrow, Meniere's Disease IS autoimmune disease. Again, there are no tests to prove that you have Meniere's, just tests to prove that you have something else, like an acoustic neuroma (reason for an MRI). That's one reason why it's so very frustrating. You'll meet people who've been diagnosed who probably don't have Meniere's at all...but are convinced because a doc told them that's what their problem was. The estimate is that 80% of people diagnosed with Meniere's really have something else. That's of little comfort to the people who've been misdiagnosed! The best thing is to start tracking what stirs up trouble, causes bad days: the solution to the problem is in your hands, no one else's. Totally frustrating! Even if you knew for certain that you have Meniere's, there's no standard treatment to "fix" it, and there's no cure. You need to figure it out on your own.

Most docs, once they've applied a Meniere's diagnosis, advise patients to avoid salt (very restrictive low-salt diet). That almost never works, but allows the doc to suggest a "fix." The idea is that salt encourages the body to store fluids, including fluids in your inner ear. Lots of us feel far better after doing some sort of very active exercise, so some believe that the exercise reduces the amount of inner ear fluid. In reality, I believe that ignoring Meniere's long enough to do something you think you can't do is a real achievement and makes you feel as though you're in control, at least for the moment.

The two things that do work, over time, regardless of exactly what the disease is (once a neuroma has been ruled out) are searching for the thing or things that are triggers for you and learning to do daily VRT. I know that doesn't seem like much, but those two things are the key to living a normal life. I've pretended to be a norm for nearly 40 years, have beaten the doc who told me to just stay in bed FOREVER! During the worst four years of the disease early on, I managed a small publishing company, never missed a deadline, did lots of fishing travel to remote lodges. I've had crises on jet boats on wild rivers, in wilderness lodges, on cross country jet flights, in restaurants...name it, I've done it. I once had to leave a highly-charged meeting about a cover image right in the middle to go out and vomit for hours in my van. Let people around you know what your problems are: just doing that will remove the stress of suddenly getting worse with people around you afraid that you have a real medical emergency. The last place you even want to be during a crisis is in an ER, with all the bright lights, people asking questions! You can remove some of the stress about not hearing well (and hear a bit better as a result) if you let people know that you have a hearing problem. Works wonders!

Good luck!

Thank you, and congratulations for living your life so fully!