I posted here roughly a year ago, undiagnosed, and hoping for something to cling to. A lot has happened since then - including the fact that I have indeed been given the official diagnosis of having Meniere's Disease. Getting that diagnosis was, and is, a bittersweet thing. I'm thankful that it is nothing more serious, but so so aggravated that this is just how I have to live my life now. Everyday I am hoping and wishing that I will just wake up and feel okay. Some days I do. Most days I don't. Lately it's the worst it has ever been. I feel like I'm living with my head underwater. The pressure and fullness in my ears is constant, and my hearing seems to just get worse. I could go on about symptoms forever, I'm sure we all can, right? Ha. So I'll just get down to it. I've heard mixed things about low sodium diets. Have you had luck? Salt is in everything! Tips on cutting it out? I'm really concerned about my hearing. Have any of you actually lost your hearing permanently? Have you lost only low frequencies, or has anyone actually gone deaf? How do you deal with the interference of everday life? This disease has made me miss quite a bit of work, and while they try to be understating, I can only miss so much. I've known of and read about Meniere's for a long time now, but knowing that yes, I DO have it, is a bit frightening. It's a new world and I have to find a way to live in it. I'm hoping for some help from people who know what this is like, and maybe even some friends along the way.
Hi DizzyKay, being newly diagnosed can be frightening, upsetting and worrisome, but keep in mind many of us have found a way to lessen or stop many of our symptoms. Unfortunately one method does work for all, but if you search these forums and read the database section, ask questions as you are, you will most likely come upon something that will give you relief. It does take time and trial and error but most of us found what works for us. For me antivirals was the answer to stop vertigo attacks, which for me was the worse symptom and so glad to be rid of it for over 1 year so far. Hearing loss for me is not due to MM so I will leave that to others to respond. Good luck and try and stay positive although I know it is difficult especially in the beginning, it is an adjustment accepting a new diagnosis.
Kay, it's not pleasant to be diagnosed. It makes it official, and you think, "What now?" I was diagnosed bilateral last year, and it really brought me down. My advice is to try everything: Low sodium, diuretic, antihistamine, anti-virals, whatever your doc recommends. Many people get relief from these things, and also the John of Ohio vitamins. None of these things are cures, but they can help with symptoms. I've missed a ton of work also. I know it's frustrating. I have sick days, but I'm a college professor and I can't miss many classes, obviously. Keep us posted on your progress. We're all in this together, and we all understand your concerns.
I would suggest that you stay away from the "Despair" button. There are many things to try, so just keep going. Mega Vit C works for some as well. For me, many things seem to work for a while, but then something makes them stop. So then I try another one.
Thank you all for the replies. I'm doing my best to stay positive, but it isn't always easy! I'm going to try the low sodium diet, and I've read a bit about the JOH vitamins and would like to try those as well. I was prescribed a diuretic by my doctor to take daily, as well as xanax for when I get bouts of vertigo/dizziness. I've previously been put on antihistamines and other such things but those seemed of no use. After some researching I've concluded that I should keep a journal to see if I can keep track of what does/doesn't help. My biggest concerns as of now are my hearing, my absence at work, and this gosh darn brain fog. I just want to function normally, and not have to say "what?" a million times a day, either out of the confusion or just straight up not hearing them. I feel like my hearing has gotten substantially worse in the last few days... I know hearing can fluctuate, but I've also heard of cases where people lose their hearing fairly rapidly, and that scares me.
DK--I'm not sure if you've progressed to dizziness, vertigo, or tinnitus, but you need to do something right away to try and prevent progression. The one thing that really needs to be stressed is that some of the nerve damage you can receive from this beast is not reversible or will take a long time to reverse if it is. I originally went to the Nuerotologist and was told to do low sodium and take dyazide which did absolutely nothing for me. It wasn't until later, after doing a lot of research, reading posts on here, and talking to John of Ohio, that I realized the medical community is so far behind the times with this disease. It's suggested in many studies this thing in most people is caused by a Herpes virus of the inner ear, and can be treated as such. Just like any Herpes infection, you will never get rid of it, but you must bring it under control or risk loosing hearing and vestibular function in your inner ear. The medical community appears to be relying on medical books written 20 or more years ago and will tell you there's not much they can do for you other than give you meds to control the symptoms, but basically just go home and wait for your ear to die. I sat around and waited to try John of Ohio's regimen for way too long and paid for it by getting tinnitus. There's no guarantee that things won't progress even on the regimen, but now's the time to fight. Since I have been on JOH since the beginning of December, things have really turned around for me. Most of the fullness is gone (although I do occasionally sense a little fullness, but not like before), I have not had any more attacks, my hearing has returned to mostly normal (except for my tinnitus), and I have returned to a normal diet. It's important to get on a fairly high dose of Lysine, or anti viral, to counter act the Herpes. I've been taking about 4500mg of Lysine, and it seems to be doing the trick. You can search on here for John of Ohio's regimen. I know he has recently updated it. Read what he has to say cover to cover and make your move now, before things get any worse. I hope that helps and I hope I don't sound too bossy, but this is really important!!
Hi DizzyKay: Echoing the sentiments above, you've got to hang in there and ultimately find what works for you. It continues to amaze me how many different ways this Meniere's thing can manifest itself. Missing work and not being able to play gigs for a while was the worst possible impact for me... I became despondent and began to withdraw from everything and everyone, fearful that an attack would strike at any time. But with some great and timely advice, suggestions, and encouragement from the good folks right here on this forum, I have fought my way back to living life on my own terms again. It isn't easy, and like many others I have found the established medical community to be of very little help so far. Two things helped me almost immediately, after two years of getting nowhere with low sodium and water pills - the JOH regimen, and cutting all wheat from my diet. I've had my ups and downs since then, but the ups have outweighed the downs - mostly... I am able to work, I am able to play music again, and I see things differently now than I did before. Hoping for the very best possible outcome for you, JMC
I was officially diagnosed in 2006 but had a sudden hearing loss in the same ear in 2004 So that's about 10 years dealing with it. I do a modified JOH-- Lemon bios, vinpocetine, L-lysine, with a Claritin, and a dyazide daily. I believe it has really slowed the progression for me. No vertigo since 2008 but off balance all the time, but I exercise and challenge my balance a little every day!! I am a bedside nurse and lead a busy life. I got my first hearing aid in 2012 and I really like it. I had a spontaneous remission from 2008-2011 where my hearing came back to normal, but unfortunately tanked and fluctuates but never really comes all the way back. I do fear going bilateral but am enjoying hearing well at least on one side for now. I do believe the cause and treatment are different for everyone and that takes some detective work-- this is a great site to do it on as we all have different causes and interventions that will work. I think your keeping a journal is a great idea!!!! Remissions and cessation of vertigo are possible. I am proof of that. Good Luck!!
Hi DK, The low sodium / diuretic diet (also avoided alcohol / caffeine) did nothing for me at all. In my case, anti-virals (prescription) combined with the JOH completely reversed my hearing loss (normal range now) and got rid of my other symptoms as well. If I was you, I would start the JOH immediately and talk with your doctor about anti-virals - many on this board have had great success. Kind Regards, Colin
All of these stories illustrate the bewildering variety and mystery of Meniere's. Some peole get help from the various treatments; some do not. I did JOH for nearly 8 years, and it did little to help. I'm sure I would be worse off without it, but it just didn't make a major difference. Same thing with anti-virals (Valtrex). Same thing with betahistine and Dex injections. I do low a sodium diet just because I'm paranoid, but I'm not so sure it makes any difference. I've had nights where I cheated and ate pizza, and I felt OK the next day. Other nights, I had brown rice and veggies with little or no sodium at all, and I woke up the next day dizzier than hell. All I can say is, try everything that you hear about and see if it helps you. It's a long process, and it can be frustrating. All of this palliative treatment is somewhat helpful, but it's not getting to the root cause of Meniere's. I'm on the bandwagon with Stephen Spring: Meniere's is caused by some kind of infective agent, whether viral, bacterial, or fungal, and your immune system can't fight it off because of malfunctioning cells. He's on to something. I told my doc about it today, and he agreed. Bless all, Ron
I'm glad you're back on the gig, man. I had to give it up, at least until I can find a cure. I have worked consistently year 'round as a musician for over 40 years. This is a huge loss of income, and it's scary.
Kay, welcome to the board. As much as these guys rock, I wish it didn't exist...that we were all "cured". They are right though. Everyone is different, and "meniere's" is a wastebasket term for "we don't know what the heck is making you dizzy". And the doctors are either uneducated on the topic, or just refuse to give credence to facts uncovered by the sufferers themselves. Please give JOH a try. I think it is so effective because it has several components that hit different affected areas. Antivirals are also worth trying too if you can get a doc to prescribe them. Hang in there Kay...we've all been there.
Hi, I'm also new here and have been reading this forum for a few months now. One of these days I'll get to writing a proper introduction. I don't have vertigo attacks but have some occasional dizziness and balance issues. My other symptons are tinnitus, hearing fluctuations, hearing distortion, and occasional fullness in the ear. This only affects my left ear. A couple of months ago, my doctor put me on a low salt diet and a diuretic. At first I didn't notice a difference but over the past week and a half I definitely notice an improvement. I'm not rushing to judgement in saying that the low salt diet and diuretic have worked as it could just be a temporary remission of symptoms which has happened before. I am keeping an open mind though. I also plan on trying some of the JOH supplements. As far as the low salt diet, it is probably one of the hardest diets to follow. The recommended sodium intake per day is less than 2300mg but my doctor has suggested only 1500mg for me. It's amazing how much sodium is in food, especially in things you wouldn't think contain much. You'll need to give up many foods you like as well as do a lot of home cooking. I know there will be days when I won't be able to avoid a higher sodium intake (e.g. holidays) but I'll just have to be careful and not go overboard. Tom
Tom, Heart Healthy Market is a good source for low sodium food. They even have salt-free pickles! Rather pricey, of course, like most specialty food stuff: http://healthyheartmarket.com/
Hi tom and welcome but so sorry you need to be here. I hope your relief from symptoms continues! @Ron OMG salt free pickles!! I miss eating pickles, gonna get me some! I was just in a specialty store where I shop and wanted to buy a jar of pickles but my husband said no, too much salt, and ofc he was right not only for MM but my bp etc. Now I can have my pickles and eat 'em too
Hi Kay, Sorry you have ended up back here. There are some things like JOH that have helped some but not all. That is the thing with this beast there is no one thing for everyone. I am one of the unlucky ones and I was unable to find anything to help. I have suffered with this for over 20 years. I pray you will find relief one way or the other. I will respond to your question about hearing. Yes I lost all of my hearing from Menieres. I am completely deaf. I received my first Cochlear Implant 2 1/2 years ago and just got my other ear implanted 2 months ago. I am doing really really well with my implants. It isnt perfect but it is pretty damn good. It has been a very difficult road but one that for some reason I was chosen to travel. I survived it and so shall you. Hang in there and celebrate your good days and if you are one of the unlucky ones who finds no relief accept the bad ones. Greg
Why do women love pickles so much? I've never understood it. They also have salt-free relish. Bless all, Ron
Ron, thanks for the link. There's a health food store near me that has some sodium free/low salt products which I've tried with mixed results. I've been pretty good so far at finding alternative ways to make some of my favorite dishes and it's always nice to have other options available when looking for ingredients.
