Can endolymphatic (vestibular) hydrops go away?

Posted by aviorrok @aviorrok, Jun 11, 2022

Hi,
Just diagnoised with vestuiblar hydrops (right ear) with MRI Meniere protocol
My symptomps : tinnitus, hearing loss and fullness
Can vestuiblar hydrops go away?
Thanks!

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@aviorrok, what a relief that you finally have a diagnosis. I know that you've been searching for causes for your hearing loss, tinnitus and other ear issues for some time. @jpj @carriagelady @estrada53 @morninglory @joyces may have more insight about dealing with endolymphatic hydrops and Meniere's disease.

Similar to Ménière’s disease, you may find some relief with lifestyle changes and stress reduction. Has it been suggested to you to reduce caffeine and alcohol or to look into vestibular rehabilitation to help with balance? Do you have issues with balance too?

REPLY

Reply to aviorrok (@aviorrok):
Like a Meniere's diagnosis, that's not really terribly helpful: you have entered the world of needing to determine yourself what triggers bad days...no doc can figure that out for you. Start a diary (or calendar). Use a color to indicate the kind of day it has been: good, so-so, bad, awful (for example). THEN list anything you did or encountered that day that wasn't usual for you. Include ANYTHING that was different in terms of diet, allergens, stress, exercise, weather, period (for women), etc. Even the slightest thing that isn't part of your normal life must be noted! Bad days are caused by something; we refer to them as "triggers." You may soon see a pattern that will reveal what your trigger is. Then the challenge is to eliminate or avoid that trigger.
While it's unusual that one type of food (dairy, for example) can be a trigger, it is for some people. In that case, it's possible to avoid the trigger and have far better days. In other cases, the trigger may be much harder to eliminate or avoid, like changes in the weather. No matter what else is your trigger, stress plays a big role...when you're having a bad day, your stress level increases, which only makes everything far worse. I was asked to speak during the memorial service for a close friend and found that I had lost most of my ability to balance when it was time to step down a couple of ordinarily easy steps: the stress had really gotten to me. If stress is a daily event, work on ways to eliminate it. If your job or life is overfilled with things that must be done, learn to pick the single most important and ignore all the other things while you concentrate on doing that single task. Not only will it help your vestibular situation, but you may find that you can work more efficiently this way. It may take a month of more to find a pattern that's easy to identify, but the diary/calendar approach WILL help you over time.
Another thing to do is to find a vestibular center where you can learn to use your third balance system, proprioception. When your primary (inner ear) balance system fails, you automatically begin to use vision to maintain balance and your sense of where you are in space. This is really bad: every time you move your head or drive around a corner, you lose your focal point, so you are perpetually confused and unbalanced. Proprioception is that information that you can get (if you learn how to pay attention!) from your feet, ankles, knees, hips, etc. Put simply, if you stand on a very windy point, you will automatically lean into the wind enough to stay upright: that's proprioception. The really good news is that you can work vestibular rehab into your ordinary daily activities once you've learned the most basic part! Although I've done VRT (vestibular rehab) every day for nearly 40 years, age has dulled the ability of nerves in my lower legs to transmit information. The single easiest and best exercise I do every day is to walk the quarter mile to our mailbox (on a gravel road) with my eyes closed. Yes, I peek just enough to know that I'm still somewhere near the center of the road, but all the way I concentrate on what my feet have to say. As a result, at 80, I still do difficult instream data collection for our state fisheries agency: this is my 30th year of collecting data on the same remote, wild little river. I climb ladders to clean my gutters several times a year. If the rain ever halts, I'll finish painting the outside of my house, hopefully soon! None of this would be possible without that daily VRT! I also walk in low light situations, if nothing other than through the house late at night with all the lights out. (There is no source of ambient light, no streetlights, etc., anywhere near our home in the dark spruce woods.) If I slack off on VRT, it's immediately apparent. It makes a HUGE difference in how I move around.

REPLY
@colleenyoung

@aviorrok, what a relief that you finally have a diagnosis. I know that you've been searching for causes for your hearing loss, tinnitus and other ear issues for some time. @jpj @carriagelady @estrada53 @morninglory @joyces may have more insight about dealing with endolymphatic hydrops and Meniere's disease.

Similar to Ménière’s disease, you may find some relief with lifestyle changes and stress reduction. Has it been suggested to you to reduce caffeine and alcohol or to look into vestibular rehabilitation to help with balance? Do you have issues with balance too?

Jump to this post

No I don’t have balance issues (thanks god) my hearing still get worse

REPLY
@joyces

Reply to aviorrok (@aviorrok):
Like a Meniere's diagnosis, that's not really terribly helpful: you have entered the world of needing to determine yourself what triggers bad days...no doc can figure that out for you. Start a diary (or calendar). Use a color to indicate the kind of day it has been: good, so-so, bad, awful (for example). THEN list anything you did or encountered that day that wasn't usual for you. Include ANYTHING that was different in terms of diet, allergens, stress, exercise, weather, period (for women), etc. Even the slightest thing that isn't part of your normal life must be noted! Bad days are caused by something; we refer to them as "triggers." You may soon see a pattern that will reveal what your trigger is. Then the challenge is to eliminate or avoid that trigger.
While it's unusual that one type of food (dairy, for example) can be a trigger, it is for some people. In that case, it's possible to avoid the trigger and have far better days. In other cases, the trigger may be much harder to eliminate or avoid, like changes in the weather. No matter what else is your trigger, stress plays a big role...when you're having a bad day, your stress level increases, which only makes everything far worse. I was asked to speak during the memorial service for a close friend and found that I had lost most of my ability to balance when it was time to step down a couple of ordinarily easy steps: the stress had really gotten to me. If stress is a daily event, work on ways to eliminate it. If your job or life is overfilled with things that must be done, learn to pick the single most important and ignore all the other things while you concentrate on doing that single task. Not only will it help your vestibular situation, but you may find that you can work more efficiently this way. It may take a month of more to find a pattern that's easy to identify, but the diary/calendar approach WILL help you over time.
Another thing to do is to find a vestibular center where you can learn to use your third balance system, proprioception. When your primary (inner ear) balance system fails, you automatically begin to use vision to maintain balance and your sense of where you are in space. This is really bad: every time you move your head or drive around a corner, you lose your focal point, so you are perpetually confused and unbalanced. Proprioception is that information that you can get (if you learn how to pay attention!) from your feet, ankles, knees, hips, etc. Put simply, if you stand on a very windy point, you will automatically lean into the wind enough to stay upright: that's proprioception. The really good news is that you can work vestibular rehab into your ordinary daily activities once you've learned the most basic part! Although I've done VRT (vestibular rehab) every day for nearly 40 years, age has dulled the ability of nerves in my lower legs to transmit information. The single easiest and best exercise I do every day is to walk the quarter mile to our mailbox (on a gravel road) with my eyes closed. Yes, I peek just enough to know that I'm still somewhere near the center of the road, but all the way I concentrate on what my feet have to say. As a result, at 80, I still do difficult instream data collection for our state fisheries agency: this is my 30th year of collecting data on the same remote, wild little river. I climb ladders to clean my gutters several times a year. If the rain ever halts, I'll finish painting the outside of my house, hopefully soon! None of this would be possible without that daily VRT! I also walk in low light situations, if nothing other than through the house late at night with all the lights out. (There is no source of ambient light, no streetlights, etc., anywhere near our home in the dark spruce woods.) If I slack off on VRT, it's immediately apparent. It makes a HUGE difference in how I move around.

Jump to this post

Thank you for this info…I have tintinitus and cataracts and find walking outside on the street a little nervousing as my balance is off but not inside where I have walls for reference…VRT sounds like the answer…shall look into it more…I am 83 and do not want any falls…and try to walk carefully…echo-location is off because of deafness in one ear which adds to the confusion when traffic is loud and the sun is in my eyes….this info will help I am sure. Take care and walk in peace.

REPLY
@fromthehill

Thank you for this info…I have tintinitus and cataracts and find walking outside on the street a little nervousing as my balance is off but not inside where I have walls for reference…VRT sounds like the answer…shall look into it more…I am 83 and do not want any falls…and try to walk carefully…echo-location is off because of deafness in one ear which adds to the confusion when traffic is loud and the sun is in my eyes….this info will help I am sure. Take care and walk in peace.

Jump to this post

I don't have balance issues but hike alot and tend on the clumsy side. I often enough trip on roots and such. I've had some falls as a result of tripping. Haven't been injured but its something to prevent as it could result in a serious injury. So, my solution is to use hiking poles. Purchased some nice carbon hiking poles which are very light. They really help me to catch myself after tripping and have prevented some fall events. They offer a lot of security against trips & falls.

REPLY
@johnbflat

I don't have balance issues but hike alot and tend on the clumsy side. I often enough trip on roots and such. I've had some falls as a result of tripping. Haven't been injured but its something to prevent as it could result in a serious injury. So, my solution is to use hiking poles. Purchased some nice carbon hiking poles which are very light. They really help me to catch myself after tripping and have prevented some fall events. They offer a lot of security against trips & falls.

Jump to this post

Good idea!..I do have a special handmade blackthorn walking stick…that I will try and use…and not forget it someplace…I’ll have to put some I.D. On it and hopefully it will get returned to me. I tend to be super focussed and if there’s more than 3 things on my plate, and one falls off, it is temporally forgotten. Thank you very much for the suggestion.

REPLY
@johnbflat

I don't have balance issues but hike alot and tend on the clumsy side. I often enough trip on roots and such. I've had some falls as a result of tripping. Haven't been injured but its something to prevent as it could result in a serious injury. So, my solution is to use hiking poles. Purchased some nice carbon hiking poles which are very light. They really help me to catch myself after tripping and have prevented some fall events. They offer a lot of security against trips & falls.

Jump to this post

I think you are vey smart to use your poles. I’ve hiked for years with hiking poles and now that I’m 89 I haven’t hiked a lot but I do walk a lot and it occurs to me that one of these days I will be walking with at least one pole.

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@aviorrok

No I don’t have balance issues (thanks god) my hearing still get worse

Jump to this post

Hi, can I ask if you also experience ear fullness/clogged and pain? I think my symptoms are very identical to yours, except no hearing loss for now. Thanks.

REPLY
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