Just wanted to say hello. I have been lurking for awhile. I have bilateral mm. Just laying here on the couch after having an attack wishing this would just go away. I was diagnosed in 1996. Had the sac surgery on my left ear as it was the most active in 1998. I was pretty good for about 8 years then I started having issues with my right ear but only a couple time a year. Fast forward to the last six months I have had problems every other week it seems like. I don’t drink,smoke, try to keep low sodium diet. Take betahystine and a water pill. I have had the steroid shots but they only work for a short period of time. Now I lost my job because I became unreliable as I drive a lot doing heating and cooling repair. Thinking about trying vitamin regimen I have read about on here. Sorry for the long winded post. Being the sole provider makes this hard and no one understands unless the have it. Thanks for letting me vent.
Wood. That was the shortest long-winded post I've ever read. I used to give advice but now I'm just a confused bear cub bumping into trees without a mother. Still, we'll all chip in here to give you support. I'm sorry for what you're going through.
Hi Woody, sorry you're ailing. My experience is that MM is likely caused by a number of different infections, most or all at the same time. My most recent thought is that people with MM are likely to have stealth dental infections. Please read the thread "Tidings of Joy". It has a number of things you can check to see if you are at risk for dental issues. Good luck!
Welcome. Sorry you are suffering. Read about antivirals and other treatments here. Many people find something thatbworks for them even after years. Good luck.
Welcome to the site. The vast majority of people find partial or full relief through various methods and are able to live quite normal 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). The treatments for these two illnesses are vastly different! 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.
Thanks for the info everyone. I ordered all vitamins today the joh regimen and will try that and I see general practitioner on the 14th to talk about antivirals. My ear doctor doesn’t do antvirals. I go to the Michigan eat institute and they are supposed to be the best in the state. If there is anyone from se Michigan that has another recommendation I’m open to suggestions. Thanks again
Hey Woods, I go to the Michigan Ear institute as well, Dr. Hong. He just did a Sac decompression surgery on my ear, he's also got me on water pills twice a day and just put me on Beta Histine. So far nothing he's done has helped. I started the JOH regiment about two weeks ago now, after reading the PDF it just made sense to me and not much of a monetary investment, so I thought "what the hell, I'm going for it!" It seems to be helping, but its hard to say and it's still very early, but the pressure doesn't seem to be as bad and I just feel better overall, like some of the fog is clearing. Also, sometimes after I take my morning pills my ear crackles and pops much more than usual, almost like its going to clear (it hasn't yet, but ALMOST) Do yourself a favor and get a pill dispenser, one that has compartments for each day and at least morning, noon and night compartments, it makes managing the pills so much easier. Try to stay positive brother, I know this damn disease can bring you down, its been wearing on me too, but I found some hope in these forums and am committed to maintaining the JOH treatment for at least six months before making any conclusions. At least I feel like I'm doing something. Try to stay positive and remember you're not alone. I hope the JOH starts working for you ASAP! Be well! RWJ
Welcome, Wood. Had MM since 2003, didn't get serious til this past spring. There's so much good info here, and above all you aren't alone in this. I started the acyclovir and lysine regiment recently, still too early to tell if it will help me but I'm ever hopeful. Keep the faith!
Im bilateral...post laby L ear. Deaf right ear. Still have some spins from the R ear but its dying out now as the R ear vestibular fully dies. So deaf and somewhat dizzy. I know your pain man. But its going to be ok. Do all you are saying. Nothing to lose and maybe a lot to gain. Be sure you are under the care of one of the best dizzy balance MM docs in the country, be sure you have had a full medical evaluation. The good news is that even if no regimen or medical management works there are people like me out there with two dead inners ears (balance and hearing) and life moves forward. You can kill off the balance systems as a last resort and you can have hearing with a CI. So even in the worst of cases you will be ok. The brain is a wonderful thing and adapts to your situation. Meanwhile I know its a bear to work through the details and get there. Don't give up. Fall forward. Life is on its way.