Hello all. First thanks so much for everything, I have been a lurker for about 2.5 years. I am amazed at those that are so consistent in their comments and help, thank you so much. I had sudden hearing loss about 2.5 years ago. I had oral steroids which brought back more than half of my hearing. I have never had the vertigo that so many of you are truly struggling with. I started on JOH and acyclovir, and had sudden remission for about 8 months. I stayed on JOH maintenance and had been good about doing it. Suddenly about 15 months ago the tinnitus returned. I increased my JOH doses and went on another acyclovir cycle. The symptoms kept getting worse. About 3 months ago I also had mild dizziness for about 3 weeks, and it started with that giddy feeling. I was panicked that vertigo was starting so I met again with the doctor (director Otolaryngology at johns Hopkins). he has done some Meniere's research for NIH and is doing a new study. He said we can try anything and everything so we started with Acyclovir longer term. Now the tinnitus has become so loud that I can't hear people, and the sound feedback is awful. I noticed that it was really 3 times as bad when I got up from a reclined position like the sofa, and it only lased 1-2 minutes, but it was extremely loud. As so many of us do, I looked on this blog for anything new or ideas. I read about the upper cervical and TMJ. I was thinking about the jaw and started rubbing it. Not sure the sequence or why. This all happened last night. The tinnitus went away in seconds!! I noticed how sore my jaw was when I rubbed it as well. I also noticed if I rub my neck it seems linked directly to the sound. But it returns in about 2-3 minutes and then I have to rub it again. Not a long term solution. So I think this might just be an additional cause of the tinnitus lately in addition to the Meniere's, but who knows. Does this describe TMJ?? Anybody had this? Anyway, how do I get started on the process of checking this? Any recommended strategies from lessons learned? Do we feel confident these dentists know how to fix the jaw issue.. A dentist in the area has written a book about Meniere's and this issue, I guess I can give him a try. Heard success stories about him. Its not traditional use of dentist so not sure how I check credentials. With regard to the upper cervical, I get very nervous about chiropractors. I can use the NUCCA listing. Are they the only ones that can take x-rays and truly analyze the issue? I know I seem overly cautious. My other option is to wait until May 11 and see the Hopkins doctor again and have him suggest a sequence ( moving appointments to earlier is impossible at Hopkins for specialists). Any help with this would be great as I start on this new approach. Thanks again so much for the blog--even if there is no remedy we need someplace to go and know we are not alone. Thank you for your help. Have a great weekend.
Nucca is in the chiropractor "family" but in my opinion definitely different. I support Nucca. Challenge for me when I moved to the East Coast is that there are not as many here near me in VA. Sadly. To me it definitely sounds like you have a TMJ issue going on. I would recommend that you see if you can find a Nucca dr near you. I place a high value in them helping me! Also, note that for anti-virals, some people respond better to valtrex. Also, anti-virals should be at the high dose initially and then tapered down to a maintenance dose ongoing.
hi This post might help (hope i've copied it ok) http://menieres.org/talk/index.php?topic=1870.0 best wishes ball
Thanks so much for your replys, I really appreciate it. I think I will try the TMJ idea first with a tmj dentist as a start and then go from there. Thanks
Visit this website http://menieresnomore.wix.com/menieresnomore read the stories and join the Facebook group. You need to see either a neuromuscular dentist who has trained at the Las Vegas Institute, or a GNM dentist http://occlusionconnections.com/gneuromuscular-dentistry-gnm/ I'm not too sure about the difference between them but you would have more chance with one of these above a regular dentist. Alas, it's not cheap and requires wearing day and night acrylic mouth appliances, which I personally am struggling with due to the discomfort, but need to persist with. Getting your spine/neck into alignment would help too. I am also wary of chiropractors, or chiroquacktors as someone here referred to them as.
The Menieres No More lady had Menieres for over 20 years...you probably read her story in the first link. Her motto is to 'pay it forward' and try help others, which is awesome. Several members here do the same thing...Vicki and John of Ohio are two I can think off. Great attitude which I am very grateful for.
I've been seeing a Nucca chiro for 3 years. Originally going very often, now maybe once every other month. It's a very gentle adjustment. See www.nucca.org