Hello Everyone, I am new to the forum and am enjoying reading on things people have found as tools to help living with the disease. I have had Meniere's for 3yrs and my younger brother has had it for about 8yrs or so. His has Meniere's bilateral whereas I have it only on my right side. I have concerns of it spreading to my good ear, as we all do. My ENT told me a couple of weeks ago that I have progressed so much in the past year that I will become disabled as my balance was so "off" and I was having 2 - 3 "spells" per week since Oct. The brain "fog" was so bad my family dr had me get a brain scan to see if maybe I had a stroke. I didn't. Even my ENT told me that the brain "fog" I was describing was not related to Meniere's. I am relieved (to an extent) that others know what I am talking about. I am not alone. My brother lives in MI and I live in MT so we cannot get together and discuss what is going on. He has had 2 surgeries and the 2nd one made him have to take a year off work to learn to walk again. I am not planning on any drastic surgeries of any kind. I felt hopeless after my last ENT appointment as he again reminded me that there is no cure for Meniere's and it appeared I just had to live with my symptoms. Hopeless. My son found the John of Ohio online plus Joe Bongiorno story and I immediately found HOPE. I have started the John of Ohio regimen and my family dr is behind me all the way. So thankful she is onboard with me. I did go to a naturopathic physician. He gave me a shot in my neck (said it was to calm my ear nerves) and a bottle of Morus Fruit Tablets to take 3 X's daily. I do not know what was in the injection so my family and doctor are not happy I let him do it. He said to get 2 acupunture therapies before returning in a month. My family dr said i should stay on J of O regimen and do one treatment at a time. I cancelled accupunture but my balance is much better & haven't had a spell in over a week. I am on thos Morus Fruit tabs amd the 1st 3 in J of O regimen. I will be ordering the next on his list of supplements this weekend. I have hope which I needed so badly. Just wanted to introduce myself and my disease. So happy for this site!!
Hello Paula, I'm glad you found us. Welcome. Look around. Read a lot. Learn much. I hope you don't worry too much about becoming disabled as long as you have Meniere's in only one ear. If you've been having vertigo attacks at the rate of 2-3 times a week since October, you've probably suffered a lot of damage to your vestibular system in a short period of time. Your other side will start compensating for the loss on your MM side. Some people here have had a VNS or a labyrinthectomy, which completely destroys balance function on one side. You can live a normal life with a balance system on only one side. Some here are getting incredible results with antivirals. You'll read a lot about that here and it may be something you want to bring up to your doctor. A shot in the neck sounds very scary, especially if you didn't know what it was! Sometimes, though, you'll do just about anything if you think it might help. I hope the JOH regimen helps you.
Hey Paula, I'm so glad you found us. We've all had one experience or another with Menieres so you are definitely not alone. There's so much research here to take advantage of. You can print some to bring to your dr. And take notes when you're researching. I'm glad you're trying the JOH regimen. I'm not sure if it would be a good idea but you should look into Antiviral treatments. There's a lot of information here in regards to that treatment. I think it's the latest way to treat Menieres but not all Drs are on board with it. If your Dr doesn't know about it then find a more up-to-date Dr. Who knows Menieres well. Good Luck Everyone is here to support you.
Hi Paula, I am happy to hear John's regimen is helping you, that's wonderful. Since it is you may want to look into antivirals as well, which does the same as the lysine (suppress an HSV) in JOH protocol but works faster. Doing both is fine according to John. I have been symptom free for over 3 years due to taking an antiviral. Many here have gotten symptom relief from them as well. You can read about the study done by Dr Gacek, the link is in my signature. I am also happy to hear your doctor is being supportive. Many doctors aren't when it comes to trying John's regimen or antivirals. Good luck and keep us posted.