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Is there anyone here who has Meniere's disease?


Sweet Home Alabama
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Mine was under control for several months- so much so, I began to enjoy favorite foods again just like normal.  A few weeks ago, I began noticing more ringing and some pressure/fullness-the classic Meniere's symptoms. I have been on a diuretic since diagnosis (was off very briefly to see if I could stand it).  Because of the new symptoms, my ENT put me on prednisone which really didn't clear up the ringing.  Now, I'm on a stronger diuretic with more prednisone and potassium.  I am still hearing the ringing.  I have cut caffeine and salt tremendously.  I know these must have been the culprits.  

 

It would be helpful, I think, to hear from others who have struggled with this condition.  What has your experience been?  Has anything helped?

 

I sure would love to sail right through this with my hearing intact.  

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My mom had it hit hard earlier this year. Miserable :(. I actually think her Chinese herbalist was the one who cleared up the worst of the symptoms, but I know she had some additional medication prescribed too.

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I have it, although not severe. It always takes about 4 weeks for my body to recover from the effects of caffeine, and to start seeing some improvement of symptoms. Fatigue also really impacts me, so when I'm flared up I make certain I'm getting plenty of sleep. 

 

Hope it clears soon!

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I've had it since I was a kid. Most of the time I don't even notice the ringing in my ears.  You just sort of get used to it/tune it out. The dizziness, I had the worst of that in my 20s then it went down to 1 spell a year in my 30s and I haven't had one in years now. 

 

Never really thought about using medicine or adjusting foods. I don't even remember a time when I didn't have it. So it'd be kind of scary for it to go away.

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A friend has it, I'm unsure of the details, I haven't properly studied it and was under the assumption it is degenerative leading to deafness eventually and incurable, but you're talking about getting through it with hearing intact, so perhaps I'm wrong and my friends case is just severe?

 

I know she has had to cut all salt from her diet except for a perscribed amount she has weekly as a tin of tuna, so no store bought bread or sauces or anything as salt is always added, she cooks completely from scratch, wont even eat a store bought cake as salt is added.

 

She used to have days long spells of dizziness and nausea from her ears. They stopped last year. Not a good thing, it means her hearing has deteriorated so much it doesnt give her vertigo anymore. She will go deaf eventually, no solid timeframe but right now it looks around 3-5 years. We are learning sign language alongside her and her kids this year.

 

I also knew a much older lady who had it and found concentrating on anything made it a lot worse. She couldnt read or sew or anything, she essentially spend the rest of her life on brain rest. However, my friend has no problems concentrating at all so i guess symptoms vary a lot.

 

I should really research it further, but I know it's an awful, horrible condition.

 

Let me know if youd like me to put you in touch with my friend.

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Oh, ladies, thank you for replying.  My Menieres is not hugely bad right now. It is much worse than it was though, and I am trying to do all I can to keep it from getting worse.I don't have major dizziness presently. When the condition began, however, dizziness was a primary symptom.  I feel a little twinge of lightheadedness/dizziness occasionally.My ENT has told me that the ringing is the sound of my ears losing their ability to hear, and that is bad. He told me that if the hearing is going to fail, that it happens quickly and that it takes weeks or months to get it back and that some people do not get their hearing back.    My right ear is worse than my left, but I hear a tiny bit of ringing in my left ear too.The good news is that some (and I'm counting on being one) pass through Meniere's.  They may lose some hearing.  I guess a few don't lose any.  Then there are all the others who have terrible cases and lose most or all of their hearing.We'll see how Tuesday's hearing test goes.  I feel sure I've continued to lose hearing in my right ear.  

 

So, as for cooking, I do not add any salt to anything that I eat.  I have begun using Mrs. Dash on all my food. I'm having to modify what I cook.  Oh, I should say that I pretty much manage to avoid consuming all salt for breakfast and lunch meals.  The only exception is cream in my decafe coffee.  But the supper meal usually has some salt.  For example, I cooked a chicken pot pie for supper earlier this week.  I did not add table salt, but I used low cholesterol cream of chicken soup.  (I realize the cholesterol isn't relevant, but it is the healthiest version of cream of chicken soup.) I also used my own chicken broth.  Even though this only gave me about 500mg +/- of sodium, I would still like to find a way to cut that down.  

 

I woud love to hear about cooking methods/recipes that would help make food taste good without using salt.  

 

 

Thank you again, ladies.   :)

 

 

Edited by Sweet Home Alabama
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Sleep apnea can be related.  A CPaP machine can help if that is the case. 

 

Steroids can help.  A friend of mine had injections that would help her for about a month at a time.

 

In my friend's case, hers is very severe and can leave her unable to stand for hours.  If she tries to stand, her vertigo is so bad that she will be violently throwing up or will faint.  She has sustained bad injuries from fainting on the sidewalk. 

 

She actually takes a drug that is a derivative of LSD.  She is in another country that prescribes this.  I do not believe that you can get it here in the US. 

 

My friend does not cook with any salt or eat any products with salt in it. 

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I agree that low sodium is usually made from scratch. However, for those times you just need to grab something, Trader Joe's has a LOT of low sodium options. Some of the soups, for example, had much less sodium than the advertised "low sodium" big brand soups. There's a long list online if you Google.

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