Hi everyone, I was diagnosed last week with Meniere's. I am glad to have found others who are experiencing similar challenges. I don't get to see my long-term ENT until December, which means I can't really ask questions until then. The Dr that diagnosed me said that a low sodium and no caffeine diet would control things. Does everyone eventually lose their hearing in the affected ear? And their balance? Right now I just have tinnitus and periods of vertigo and nausea. Does controlling salt mean that I decrease my chance of losing my hearing? Thanks!
HVJC, Sorry for the news. Here are two good sources of info for Meniere's (MM). But as always, read as many sources as you can to avoid bias and round out your knowledge. Dizziness and Balance.com. Too much info to take in at one time. You'll find yourself coming back to it again and again. The sight is more a knowledge-journey than a quick answer. The bias is toward Gentamicin injections, rather than more serious surgeries. (As for your question, Dr. Hain recommends a low sodium diet, but he also insinuates that it's not as helpful as is touted.) https://www.dizziness-and-balance.com/ MDIC http://www.menieresinfo.com/index.html You seem unusually calm about it, which is amusing. PM me if you ever feel the need. This is a really helpful forum in many ways.
Thanks! I will continue to read. I think I am calm right now as the symptoms seem pretty minimal at this point. I wasn't so calm when I was lying on the couch unable to move because of vertigo. Part of me is still hoping that was a two-time occurrence and I won't have to go through that again. I have no idea what my ENT will know or recommend. I live in a smaller city, and am not sure how familiar this ENT is with Meniere's, given he has to deal with all ENT issues.
Hi hvjc, Welcome to the site. The vast majority of people find partial or full relief through various methods and then move on with their lives. This forum has the really hard cases, as most people move on after they get relief. Don't assume that you'll be one of the tough cases. The odds are greatly in your favor. So don't be discouraged. Try everything. There are several things that can cause Menieres-like symptoms. You can find an exhaustive list here: http://www.dizziness-and-balance.com/disorders/index.html You should first have yourself checked for all the possibilities by various specialists. Be sure to get the full workup. For example, without an MRI, you cannot rule out tumors. Without a high-resolution scan, you cannot rule out SCD. There are a a lot of different tests for different things. Get a second and third opinion. A lot of doctors spend less than 10 minutes looking at your file and then make a diagnosis. A lot of folks here have been diagnosed with one thing (e.g. Menieres), only to find out years later they had something else (e.g. MAV). Check your diet. MAV can often be controlled with diet. Viral-related Menieres requires that you control your Arginine-Lysine ratio in foods. A lot of folks have found relief from antivirals. Obviously, this doesn't work for everyone, but for those of us who are viral-related, it works about 90% of the time (this number is based on published data by Dr. Gacek in peer-reviewed journals). This is a good place to start reading about antivirals http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf https://fhs.mcmaster.ca/otolaryngology/documents/recoveryofhearinginMeniresusingantiviraltreatment.pdf Many people have found relief from various supplements. The most famous one on this board is JOH. You can find his regimen here: http://www.zoominternet.net/~kcshop/JOH.PDF If you think you might have MAV, read this book: https://www.amazon.com/Heal-Your-Headache-David-Buchholz/dp/0761125663/ref=sr_1_1?ie=UTF8&qid=1498501145&sr=8-1&keywords=heal+your+headache There are many other regimens that have worked for others, so be sure to read all the threads on this site. There is a wealth of information here that has been built up over 20 years of experience. Even if nothing works, don't panic, because you can always get a labyrinthectomy, which almost certainly will end your vertigo problems. Just make sure you know which ear is bad and that you're not bilateral (even then, you can laby both ears in a last resort scenario). Lastly, while it's good to listen to your doctor, also listen to your body. You are your best advocate. If you think your doctor isn't giving you the best treatment, get another opinion. Keep searching. Most people who found this site eventually left because they got better. Many of the remaining folks are the really tough cases, so don't panic and assume that you'll be one. Think positive and get started on your journey with both eyes and ears open. Good luck. We're here to help.
Scott Tom, I find it odd that Dr. Hain has so little to say about antivarals, on his popular Dizziness and Balance.com. The site is sort of maze-like, so maybe I missed it. But the following is all I can find. His comment about Gacek's findings are in italics. Near bottom of page: http://www.dizziness-and-balance.com/disorders/menieres/men_new.html
Yes, i've seen his comments. He is opposed to both antivirals and surgery for the most part. I did not have a good meeting with him, as he told me to do the usual LoSo and suck it up. I'm glad i didn't listen.
Thanks for all the info. I am still wavering between some denial (I seem to have good - even almost asymptomatic days) and anger. I keep hoping I will be a mild case that doesn't progress into something more debilitating. I will continue to lurk around but I find reading about others' experiences sometimes makes me feel worse and more anxious about the whole thing....
Check out antivirals. They not only saved my balance, they restored most of my lost hearing. They dont work for everyone but they work for many.
Thanks - I have several months to gather the evidence for when I finally get to see my long-term ENT.
I was on a very, very low sodium diet for six months, and it did nothing for me. I am currently just on a restricted sodium and caffeine diet and my conditions have improved. No more long term vertigo, but still fight with very frequent dizzy spells and various weird hearing distortions. Personally I think the low sodium and caffeine diet is vastly overrated.