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Meniere's Disease

Ear, Nose & Throat (ENT) | Last Active: 5 days ago | Replies (215)

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@colleenyoung

Hi @joyces, I extend a welcome to you as well. Such great advice for @susyq213.
Joyce, after living with Menieres for over 50 years, you certainly have learned to modify and adjust to the triggers and changes. Now you're faced with a new challenge of roaring tinnitus. You may be interested in these discussions:

- Tinnitis https://connect.mayoclinic.org/discussion/tinnitis/
- Controlling Tinnitus: What works for you? https://connect.mayoclinic.org/discussion/tinnitus-control/
- Anxiety and disbelief over sudden hearing loss and tinnitus https://connect.mayoclinic.org/discussion/anxiety-and-disbelief-over-sudden-hearing-loss-and-tinnitus/

As yet, there isn't a discussion dedicated to text-to-speech apps. I'm sure many in the Hearing Loss group have recommendations and experiences to share. Would you mind starting a new discussion about this? Here’s how to start a new discussion:
1. Go to the Hearing Loss group homepage here: https://connect.mayoclinic.org/group/hearing-loss/
2. Click the START A DISCUSSION button.
3. Enter a title. Something like “Looking for suggestions for Text-to-Speech apps”
4. Write your message.
5. Click CREATE DISCUSSION

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Replies to "Hi @joyces, I extend a welcome to you as well. Such great advice for @susyq213. Joyce,..."

Re Meniere's: Those of us who were moderators of the Meniere's Discussion Group that was replaced several years ago by a FB group have come to believe that there may not be a single Meniere's Disease, but several slightly different inner ear diseases impossible to diagnose, so they're all give the Meniere's tag. Again, about 80% of those diagnosed with Meniere's don't fit the diagnosis, have something else:
A few really lucky people have, believe it or not, sticky platelets. This is alleviated by taking mini doses of aspirin every day, and all symptoms disappear.
Lots of folks diagnosed with Meniere's actually have MAV, Migraine Associated Vertigo, which is treated with standard migraine meds. These people do NOT necessarily have headaches, but they may have an aura precede an attack. They can live very well once they find an anti-migraine med that works for them.
Some people have BPPV (Benign paroxysmal positional vertigo), which can be treated with the Epley maneuver. As people age, most will get BPPV to a minor degree. Many Menierians also have BPPV. If you have very brief intense vertigo after moving your head quickly, it may well be BPPV. Lots of people notice it while waking up and turning over. I joke that you could tape $100 bills to the ceiling and I might not ever see them, because I can't look up quickly. I've only known of one person who was severely compromised by BPPV. BPPV does NOT cause classic Meniere's crises (hours of vomiting).
Regardless of what kind of inner ear disease you have, you need to do vestibular rehab (VRT) to learn not to use your second balance system. Your primary balance system (inner ear) no longer works correctly, so you will automatically try to use your vision (second balance system) instead. This leads to dreadful fights within your body because every time you move your head or drive around a corner, your focal point changes, and you don't know where you are in space. This is also what causes the crises of hours of vomiting; your eyes and your remaining inner ear function (yes, some is still there) are fighting, and your body's the battlefield.
VRT teaches you to use your third balance system, proprioception. In simple terms, if you're standing on a viewpoint and the wind is blowing hard, proprioception tells you how much to lean into the wind in order to stay upright. You need to learn to pay attention to what your feet tell you. The first exercise is to stand, feet fairly close together, eyes closed. Concentrate on what you feet say as you try to stay upright without tipping from side to side. (Have someone stand next to you when you first do this.) From standing, progress to walking short distances with your eyes closed, or in the dark, in a place where there's nothing to trip over, preferably in a hallway to begin with. When you walk "normally," concentrate on the messages your feet give you. If you've been staring at the floor or ground ahead of you, instead, glance down to ensure that there's nothing to trip over, then look ahead or even to the side as you walk the next few feet. Amazing what's out there in the world! If you practice VRT for 10-15 minutes every day, you will soon be more comfortable with your place in space. Once you have begun to practice proprioception, you should go out of your way to walk in low light situations, with "points" for rough, uneven ground. Again, always know what's ahead...be safe. I live in a spruce forest on a very hilly piece of ground where the mowed area is pocked with gopher hills. I walk outside in the dark (no ambient light here), either around in the acre we mow or on the gravel road between our place and the Pacific. If I skip VRT for even a day, I am less confident of moving around, and I have more trouble knowing where the things I reach for are...exactly.
If you have developed the "Meniere's walk where you walk with your feet a distance apart in an attempt to balance, make an effort to walk with your feet closer together (more normally). Don't "furniture walk" where you hang onto whatever you're walking past. Walk upright, looking straight ahead, with upright posture.
Another form of VRT is to dress standing up without touching a dresser or counter next to you. Women get extra points if they can don panty hose standing without touching a stable surface. You'll find that you're less stable when you first wake up, so don't try this until you've moved around for at least a few minutes.
You'll hear, as has been written by members of this group, about various things that must be avoided, salt being the most common. This gets back to what we refer to as "triggers," and they're different for all of us. Because my trigger is abnormally low hormone levels, salt has zero effect on how I feel. Trying to live on a strict low-salt diet can backfire when you are in a situation where you have to consume "normal" food. It's actually healthier to simply avoid excess salt; the normal US diet involves more than twice as much salt as anyone should consume. Again, we all have different triggers and what's a trigger for me may have zero effect on you.
The one thing that works for all of us is VRT, so learn to do it and do it every day.
End of lecture from someone who's done VRT every day for over 30 years.