Living with Meniere's Disease

United States
December 16, 2006 6:31pm CST
I've only found one other person here who has Meniere's but I wanted to open the subject back up in case there are other newbies like me out there. Looking for support? Got a great Lo-So recipe? Funniest brainfog joke ever? Please share it! Finding someone else with this disease, even online, is like finding a long-lost twin walking down the street.
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1 response
@lecanis (16664)
• Murfreesboro, Tennessee
15 Jan 07
I was pretty recently diagnosed with Meniere's disease myself. I'm having some pretty major problems with the low sodium diet thing. How about you? I've been looking for resources online and haven't found as much as I had hoped. Some of the sites I have looked at make Meniere's seem not so bad, but I'm a little scared because my hearing function has tested lower each time I've been tested. Also because I have a baby and the vertigo makes me a little paranoid just doing everyday tasks like carrying him around. I'd love to hear some about how you're managing this disease, and how long you've known you had it!
• United States
2 Feb 07
I've had Meniere's for about 10 years. It's had one weird side effect--I have the tintinitus, so I started sleeping with the radio on, just to keep my mind off the ringing and now I'm addicted to "Coast to Coast"! It's a radio show, usually on AM radio and runs from 1 a.m. to 5 a.m. hehehe Other than that, I've had a few restrictions--I have to have lights on at night to walk around (I heard that your brain substitutes your eyesight for the lack of balance--so if you can't see, then you (I) fall over!). Sometimes if I move my head too fast I get a momentary dizziness. As for the sodium free diet, I can have salt but I'm taking a diuretic (water pill) to make sure that I don't retain water. I use a lot of spices and cook from scratch whenever possible because of the huge amount of salt in prepared food. Sounds like we're pretty lucky though, my granddaughter's 3rd grade teacher got it and she had to quit teaching and is in a wheelchair! Yuk!
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@lecanis (16664)
• Murfreesboro, Tennessee
3 Feb 07
Wow! That's scary. I hadn't thought about winding up in a wheelchair. I suppose the things that worry me about Meniere's is that I can't do my job as well as I want to, and I'm worried about taking care of my son. There have been a few times already that I have fallen down at home, and he's seen me and been worried and upset. He's only 8 months old, so he doesn't really understand what's going on, and it's scary for him. One time he crawled over to where I had fallen and was pulling on my hand saying "Mommy." It worries me. It sounds like you're doing a pretty good job of managing it. It helps to hear from someone who has had it for a while and is doing well.
• United States
5 Feb 07
Oh WOW, I totally forgot about Coast to Coast, I totally used to listen to that show all the time, too!! One of the things to take into account is that when you're having attacks paranoia is a completely normal side effect. The disease messes with your head and makes you feel like you're going crazy. Like it's coming to get you, if that makes sense, even though it's already there! Talking to other people with MM and similar diseases is what got me out of the depressed and defensive funk I was in for a year or more. Low sodium diet, I've got two words for you: Mrs. Dash. Oh my GOD do I love this stuff, and now there are a billion varieties in every grocery store! The good news is that the FDA is finally making sodium a big deal so the media's all over it. We'll be hearing more and more about how a lo-so diet is a good idea for everyone, not just menerians, and the marketplace is going to start reflecting the new "trend". Find the few products that make is livable for you, but keep your eyes peeled for new Lo and No Salt options! The only other thing I can say is to bulk up everything you eat with lots of fresh fruits and veggies so you feel fuller and get enough calories.
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