I posted my first post about a week and a half ago. I have to admit I have stopped reading some of the posts of the others that suffer horribly from this disease. It's plain scary! The other night I spoke with a friend from the Fort Worth area who is an internist. I knew his wife was sick with something for years, but didn't realize it was Meniere's. She first contracted it about 25 years ago, and it has been brutal. She ended up getting bi-lateral Meniere's and eventually went deaf in both ears. The first ear rendered that way by voluntary surgery to treat the profound vertigo. About six months ago she received a Cochlear implant, which he said is a major learning process. Even though he is an internist, and this certainly isn't his specialty, he (because of his wife) has become extremely informed and up to date on Meniere's. I did mention that I first noticed symptoms about six months ago, and was wondering why I haven't had any of the dizziness or vertigo. He said some progress to it, and some never get the vertigo end of it. Again thinking that I could develop vertigo at any moment has become somewhat of an issue with me. Need to just put it out of my mind. So I have been on the antivirals for about a week. Also doing Johns supplements regimen. Whole lot of pills to swallow. Don't care as long as it all works. Mark
Hey, don't spin yourself into a ball of worry. Yes, MD can be scary. But you don't have to let it control your life.. No two people are alike, and what happens to one person may never happen to you. Just take it one day at a time.
It is good that your doctor agreed to antivirals. If started early enough there has been really good success stories. With regards to the rest...yes if I get a vertigo attack (or in my case they come in clusters for 3-4 weeks) it sucks. I hate it. At some point I will cry. BUT I will get through it. I think that the stress of worrying about it, dreading it contributes to it. I also try to keep in mind (hard sometimes) that as bad as it can be..there are many in this world that have worse things to deal with. In my experience, trying to minimize/manage stress and getting enough sleep go a long way to keeping me feeling better. Antivirals helps me with the rest.
mzwern: this disease will only do to your life what you allow it to do. Do not let this shit disease control your life. Living with vertigo is a personal choice, i refuse to do it. I had a laby and lead a normal life. I also sponsor a vestibular support group (ok, i bring the coffee and donuts) through The Atlanta Ear Clinic and know many people who have had double vns' and gentamicin in both ears and even one person with a double laby and let me tell you. They get on with life. There are many many people who have left this forum as well who simply took care of their problem and left to go live life. Throw everything you can at it, but if nothing works and you reach a point you just want to give up. Then there are procedures to take care of the problem. Good luck!!
When I was first diagnosed with MM I came here for support. I too thought it was way too scary what some folks was going through and decided this forum was not for me. I left. Three years ago I rejoined due to my symptoms being out of control and now I was one of the "scary" people. The support on this forum is amazing. I found my way out of the debilitating vertigo. I live a pretty normal life (what is normal?). Stick with this forum, ask questions and remember there is always hope and always a way out of the hell that MM presents to some people. Good Luck!!
When I first came to this forum I was also scared to death with all the hell some people had been going through. It put me onto a carousel of thinking what if what if what if... I also found a great deal of information on how to tackle the disease. So far (almost seven months) acyclovir and JOH regimen work fine for me. But, I longed for a professional help regarding my mental health. I ended up taking venlafaxin (brand name Effexor XR in the US, Alventa in my country), and it helped a lot. If not for that, I think I was on a verge of a psychic breakdown. Because this condition is so unpredictable... Good luck to you, you are on the right place.
Hi, mzwern. I have also been diagnosed with cochlear Meniere's Disease. I woke up one day in December 2014 with both ears clogged and have had this ever since, plus pressure, dizziness at times, and hearing loss in my right ear. So I have had this about 10 months. No vertigo so far. At my last hearing test, the audiologist said "this does not have to go to vertigo." I have hung onto her saying that. She was an older woman with many years of experience. My approach is to tell myself it hasn't happened yet, so don't borrow trouble and keep going forward with best practices. I have taken acyclovir for about three months and have switched to taking valacyclovir for the last two weeks. I think the antivirals suppress my symptoms, but I'm actually not totally sure. My problem is I don't have big enough swings in my symptoms to figure out the triggers. Even after 10 months this is still a huge puzzle to me and I'm almost totally clueless. My doctors have all been the traditional ones who do not look beyond the routine treatments. I look forward to hearing what your doctor prescribes for you and how you do. And I wish you the best of luck in getting quick relief.
Thank you all for your great replies, I really appreciate it. I have calmed down quite a bit concerning the potential of developing vertigo. Both my ENT's told me that it may never go into vertigo, and just go on a low salt diet. I have been on the low salt diet since the last diagnosis (about two weeks). Yes I realize that I am fortunate my family practice Doctor is extremely progressive thinking, and took the time to research this disease throughly. I through research had put myself on John's of Ohio after diagnosis. She researched all his supplements for studies, and prioritized them in order of importance. She also put me on Valtrex 3 grams daily for a month. Then two pr. day for the next three weeks. Then maintenance 1 gram daily for a year. She also said that Glutathiione in conjunction with vitamin C has show significant improvement in poorly managed Meniere's patients. Intranasal dose. Unfortunately this is prescription, and has to be compounded. You can purchase glutathione over the counter in pill form, but she felt intranasal would be preferred. I will say this. It smells like rotten eggs. Very tough for me to take. Thanks again for your replies Mark