Hi folks, I have been recently diagnosed (mid-June) with bilateral atypical Meniere's. I had sudden hearing loss in 2012 in my right ear. All frequencies recovered except for the lows-250 and 500hz. I later discovered that they were indeed down along with my right ear a bit, too, since at least 2007. I had a cold in early June and discovered everything was very, very loud when both Eustachian tubes opened. I was in a concert hall and the volume of the orchestra was almost unbearable-it was just too loud. Two days later my ENT prescribed 60 mg of Prednisone, which I took for 10 days. My low frequencies have been fluctuating for at least a month or two as indicated by hearing tests. I was not really concerned and now know I should have been. When my early June cold broke I also had either hyperacusis and/or recruitment as well as fullness, pressure and tinnitus-all in the right ear. I have not had any vertigo or dizzy spells, yet. Dr. Hinrich Staecker from KU says I may not ever develop vertigo, though I know it is what most people have to contend with. The fullness has somewhat declined but the tinnitus and some sensitivity are still there in my right ear. I am on Dyazide, a low-salt diet, no caffeine, chocolate, or alcohol. Are there others with atypical Meniere's that do not develop vertigo? Has anyone been able to slow down further loss of hearing in one or both ears? If so, how? I am a newbie and am very grateful for any advice/assistance you may be able to offer. I am also a professional musician and know that my performing career may well be over sooner rather than later. I mostly want to hear the sounds of my family for as long as possible. I have an opportunity to be in Washington next month and am thinking of visiting John Hopkins for a third opinion/consult. Any thoughts about that would also be most welcome. Thank you all in advance.
I would recommend getting on Valtrex as soon as possible to avoid letting this go any further. It has worked for so many of us now. Check the link in my signature for details.
Take the Gacek paper with you in case he isn't familiar with it. And read all the info on this site about antivirals. The more educated you are, the more likely you will convince him. If he won't try it, I'd get another doctor. Any doc can script it.
Gacek paper: http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf
Hello, I am atypical also it has been 4 years and thankfully no vertigo. I take valtrex modified JOH regimen, Diamox and lexapro.
You presented exactly how I presented 4 years ago. I highly recommend looking into a NUCCA upper cervical chiropractor. Do you sometimes feel like one leg is shorter than the other, hips uneven?
Thank you, everyone, for the helpful comments! There is a great deal of terrific information that you all have assembled. Speaking for myself I am pretty overwhelmed with this disorder/disease and its impact on my life and livelihood. I have not noticed one leg being shorter than the other, but I do have one leg that is less flexible than the other. I am addressing that as well as working on balance coordination for what might occur later.
Yes I had your leg symptoms too. Strongly encourage Nucca, it's all connected. Don't spend too much time preparing for something that may not happen. 4 years after my initial hearing loss, my ear, back pain, leg tightness have all resolved. Never got dizzy.
Your body may be compensating for an upper cervical neck misalignment. This can throw off your jaw too, causing it to press against your ear.
Antivirals helped me alot and returned my hearing to normal range though not as perfect as originally. Allergy shots helped a lot too. I was told in the beginning by one doctor that my chance of developing vertigo was about 20%. He also told me to try to avoid episodes by doing the lifestyle things like low sodium etc because each episode decreased the ears elasticity and moved me closer to classic menieres, ie vertigo. This was before antivirals and allergy treatment. I think it was the antivirals and allergy treatment that prevented it. Also i avoid caffeine. Good luck.