Hello, and thank you for allowing me to be a member of this forum. I was diagnosed with Meniere's in 1996. It took a long year of process of elimination looking at other possibilities before Meniere's was determined to the be cause of my vertigo. Shortly after the diagnosis I had surgery performed on the left side of my head and a shunt put into place. The shunt helped to relieve much of the violent spinning, but the spinning was still evident but at slower rotation. Eventually the spinning subsided for about 10 years. But, unfortunately Meniere's has returned with vengeance! Not with the vertigo, but with loud rushing sounds in my ears, accompanied by vomiting, and brain fog and loss of balance. It takes a week to 10 days for me to recover enough to be able walk around without looking like a drunken sailor. In addition to Meniere's, I also have COPD, and Valley Fever, and tinnitus. But, I'm thankful to God, that even though I have several infirmities, I'm still able (on good days) to walk and talk and have a reasonable social life. I'm looking forward to reading through this forum and learning tips and advice on how people are coping with this disease. Thanks, and God Bless
Welcome. You will find much knowledge and hope here as you are not alone in your journey with MM. your situation sounds complex, I had to look up Valley Fever. I take it you live out west? I know there is a possible link between fungal infections and MM as well as the more widely documented link with the herpes virus. Like you, I had MM for years until this past April being struck down if you will with a barrage of attacks and the usual unfortunate symptoms. I’d say about 80% of what I know about MM I learned here on this board. Welcome and 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.
Hello Pastor Dale Welcome. I feel 95% better on Acyclovir 800 mg x per day. (started on 800 mg 3 x per day for 2 months. Also on a low sodium diet.
Pastor Dale--I had the shunt surgery in 2012 and thankfully, no more vertigo since. But--if you look at many of my posts, you will see that I do have many issues similar to what you are dealing with. No 'vomiting' or serious balance issues but bad tinnitus off and on, some nausea and daily head pressure/that really 'wipes me out' at times. Trying an anti-depressant now--last two days--as this really can mess with one's nerves for sure. I haven't been able to tolerate them in the past, but am trying the very low dose to see if my anxiety/depression that comes with this can be eased, and thus help ease the symptoms. Time will tell. I do hope you get the proper treatment and do keep us posted on how you are doing. And feel free to 'sound off' anytime, Pastor.
As a person of faith with menieres also, it is a very refining thing to go through. I daily ask God what does He want me to learn from this. A troubling thorn to have, I pray God reveals the right doctors, people and treatment to heal you. I have read a lot of good information from this site, so it is a blessing you found it too. Keep the faith - Bonnie