My best friends wife was diagnosed with Meniere’s. I do NOT know the extent or any other details other than she’s having ‘attacks’ more often.
What questions can I ask her (Person with Meniere’s) to help establish possilbe treatment or Guidance. My fiend is at a loss - he does not know what to do.
I presume her audiogram would help.
What answers do you need in order to suggest what she/they should do for resolution???
I also was diagnosed with Meniere Disease about 18 months ago. I noticed about 2 years ago, I was losing my hearing in my right ear rather quickly. By the time I made an appointment with my ENT doctor, I was completely deaf in my right ear. My attacks started with the dreaded loss of balance, rapid eye movement, and throwing up. The attacks can last up to 4 hours, all the time you can’t stand up. They occur without any warning. A terrible disease.
My doctor started me on a very low salt diet. That has generally helped, but I still have episodes about every 3 months. Seems to be no cure but in extreme cases, they sometimes cut your balancing nerve in your ear. I’ve decided that I’m not a candidate for that.
Direct her to the following web site which has a lot of information. http://www.dailystrength.org/c/Menieres-Disease/forum/
Hi Matthew, I had Ménière’s (MD) for many years, eventually burned itself out, but not before it took most of my residual hearing with it! I mainly got cluster attacks that would last up to a week perhaps 10 days at a time, vertigo, sickness, fullness of ear, loss of balance, the room spinning or the walls coming in to meet me, horrendous Tinnitus, these were my symptoms and they would last for a few hours, some respite for a few hours, then it would all start again, a very difficult illness to live with and just as bad for loved ones, because you can never plan anything, the only thing I could do was take to my bed, for days! I would then go 1 or 2, sometimes 3 weeks symptom free, then I was away again…As carnutfl says, “A terrible disease”! I had so many attacks, that eventually I was totally aware exactly when an attack was imminent…Fullness of ear and Tinnitus would start up and I knew I would have to lie down, very quickly!
I was a member of the Ménière’s Society for many years, their website will give you some very good info, please see below.
Best of luck to your friends wife, she will need a lot of support as will your best friend, in their attempt to both come to terms with Ménière’s…It aint easy to live with!
Cheers Kev
Ménière’s Society UK.
http://www.dizziness-and-balance.com/anatomy/endolymphatic-sac.htm
Menieres is often thought to be caused by excessive pressure from the endolymphatic sac that regulates the pressure of the cochlea. There are some surgical procedures thought to help, some drugs, and some dietary changes. The reason for the latter is to do with the high concentration of sodium and potassium in that part of the hearing mechanism.
There’s no doubt that Menieres is nasty, and the attacks are pretty horrible. However, the good news is that it is rare that they be ongoing and regular for life. In many cases the attacks can become a lot more infrequent.
Unfortunately many Menieres patients will end up losing some hearing, but that can often be managed with hearing aids.
Talk to the ENT and an audiologist, and check out some of the support and information groups online. I see many patients who have had this diagnosis who live normal lives with very few attacks, often years apart. So this doesn’t have to be a really terrible diagnosis.
I have several Menieres clients. They all seem to refer to a past era '‘when the attacks were bad’.
In other words it seems to have an active phase which then subsides.
After several years the hearing loss will probably stabilise at 55-60 dBHL each side … although I have seen one case reaching 75dBHL.
Sadly although the loss figure doesn’t look drastic, speech comprehension can be rather poor due to the mechanical misalignments in the cochlear.
Fitting hearing aids to a Menieres client can be very tricky and will take an experienced dispenser and an appropriate hearing aid.
I enjoy fitting Menieres clients - but it can be difficult and can take many hours to make progress.
All… thx for the replies and personal experience.
I am trying to get them to join here because I have found talking helps greatly. Hopefully after forwardkng this thread she can/will jump on board and take matters by the horn… I am the type (cursed?) That must be my own advocate as NO ONE LOOKS OUT FOR YOU OR KNOWS WHAT YOU ARE EXPERIEMCING THAN YOU!!