New Here. Is this a MAV site or Meniere's Site?

Hi,

Recently diagnosed with Meniere's Disease. I read some posts as a guest before I decided to join. See a lot of references to MAV. Is this mostly a MAV website or Meniere's website? I read about MAV when I first started having symptoms. That has been ruled out for me. Looking for some guidance on Meniere's.

Thanks.

 

uspinmerightround,

Great user name! There is some great information available here. Recommend you search on "virus" or "HSV-1" to start. You can read a lot of the studies available in the Database section.

Good Luck,
carnyard

 

Officially Menieres but many MAV people here and many have both.

 

Welcome - i love your username too. I'm still trying to determine what i have one or both.

chris

 

Hi and welcome

As others have said - both.

 

people with MAV are often misdiagnosed with Menieres. For years, or forever. so we are all here.

 

Carnyard,

Appreciate the advice. I read a lot of the info in the database before I signed up. What would you recommend I do next.

Thanks

 

June,

Which one do you have?

Thanks.

 

Chris,

What are you doing to find out?

Thanks

 

Daize,

Thanks for the welcome. Do you have MAV or Meniere's?

 

Hello and welcome. Some of us don't know what we have. :\

 

thornapple,

I went down the MAV route. I was actually the opposite. Misdiagnosed with MAV when I really had Menieres. What would suggest I do next?

Thanks

 

I have cochlear hydrops, a variant of Menieres sometimes called atypical menieres. My symptoms were all hearing related such as distortion, hearing loss, tinnitus, autophony. I did not have any vertigo. I did not respond to anything until I tried antivirals (acyclovir and famvir) and followed up with allergy shots. Now my audiogram is normal. I have only slight issues now.

 

Yeah, been there. I see in your sig that you started on this Vitamin C I've seen so many debates about. Is it working?

 

Read all the information you can on here. There is good information about both medical and alternative treatments. Read them all and ask questions and try different things until you find something that works.

 

That's great. Congrats. I read in the database about acyclovir. This Dr. Gacek seems to be onto something. Do you think that's a good place to start? This diuretic/low salt thing my doc's got me on isn't doing anything.

 

Good advice. Thanks. I don't know if you saw the reply before. I see you are trying Vitamin C. Is it working for you?

 

I can't honestly tell you if it's working or not, since there are too many confounds in the data. I can tell you that the ear plugs help for sure with the Tullio's. I believe the JOH has improved my overall well-being and positive mood. I believe my symptoms went down dramatically after taking the C and i've cut back on Ativan. These are the things i believe. I can't prove any of them because i'm unwilling at the moment to stop any of them in order to control for one or the other, as i'm enjoying being dizzy-free at the moment.

 

Welcome uspin, welcome to the forum.

If all your doctor knows is low salt/diuretic it is probably time for a new doctor.

Post your geographical area and people can recommend a Neurotologist in your area.

My diagnosis is MAV. I will be seeing a Neurotologist in November for a second opinion but I agree with the diagnosis at this point.

 

Yes, I do think it is a good place to start but not all dr's are on board with it. My family dr rx'd it for me the first time. I waited 9 months before I tried antivirals. I wonder if my hearing might have healed faster and more completely if I had known to try it right away. Did they try prednisone yet? Usually they try that very fast for sudden hearing losses. They tried that with me and it didn't help but it helps some people a lot. Did you say you have a hearing loss?