Wow, what a long but great day! My hearing test and ECoG results indicate that I am not bilateral! Yay!! My right ear (good one) is doing great. My doctor thinks the pressure I'm feeling in it is related to my TMJ so I'm going to wear my little mouth guard for awhile and see if it helps. The hearing in my left ear was worse but I'm okay with that because the results for my right ear were so good. The audiologist described it as severe mixed loss. 80dB loss in the lower frequencies. Speech discrimination at 85dB was 68%.
After getting these results, my doctor was very happy for me and said he was willing to give me one gentamicin injection. He's pretty anti-anything destructive because he's seen too many people have destructive procedures done, then go bilateral and end up in wheelchairs. He said that since my right ear is so good that he was willing to give me a one-time, low-dose gent injection. I was thrilled he was willing to do that. I've been so miserable lately, I was prepared to beg. But before we do that...
He agreed to prescribe antivirals for me!!! I couldn't believe it. I had asked him once a couple years ago and he politely and reasonably said no. Now that there are generics available and the risk of side effects are so low, he said "sure, let's try it" Whoa! I was shocked. He said he honestly didn't think it would work, but at this point, I had nothing left to lose. I was prescribed Acyclovir. 800mg 3x/day for 2-3 weeks, then down to a maintenance dose of 400mg for a couple weeks. If this doesn't work, then I have my gent injection scheduled for May 25th. I'm so thrilled to be moving forward and trying something to stop this off-balance, dizziness, and nausea.
I think it helped that when I asked him about antivirals that I told him up front that I knew chances were they wouldn't work but that I wanted to exhaust my possibilities before I did anything destructive. He kind of laughed and said, "if this works, I'll pop open a bottle of champagne for you!" and then went on to say he would prescribe them for his next patient. Yikes, I really hope they do some good for me. I really don't want to ruin anyone else's chances of trying them. So many people have benefitted from antivirals. I plan to post on my progression over the next few weeks. An honest telling of any side effects, new symptoms, improvement of symptoms, etc.
Here's a link to a great compilation of resources that may be of interest or help to anyone who wants to give antivirals a try...
http://www.menieres.org/forum/index.php/topic,23217.0.html
I had e-mailed this to my doctor yesterday but he didn't have a chance to read it. From a scientist's point of view, many of the studies are flawed. However, there's still good information in them. It's the personal success studies that intrigued me the most.
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That was great news about your right ear! Not going bilateral!!
ReplyDeleteI was intrigued by your comment about TMJ. I will be interested to see if wearing the mouth guard helps you.
I have wondered if TMJ may be contributing to my Meniere’s problems. It is my understanding that TMJ can cause dizziness, tinnitus, and earaches, symptoms we are all too familiar with, in addition to headaches and muscle pain in the jaw that can radiate down the neck and shoulders. My stress levels have been “off-the-charts” with resulting clenching and grinding of my teeth for years. I have been reading Taking Control of TMJ (there’s a chapter on mouth splints) by Robert Uppgaard, D.D.S.. He writes about TMJ microtraumas that contribute to TMJ problems and head, neck, and face pain. There is an interesting quote – “The neck holds the secret to most dizziness.” – in his discussion of the sternocleidomastoid (under the ear) muscle trigger points that can cause earaches, dizziness caused by movement or improper posture, disturbed balance, spatial disorientation and vertigo; masseter (cheek) muscle trigger points can send pain deep into the ear causing tinnitus; medial pterygoid (inside the jaw) muscle trigger points can cause the stuffiness (aural fullness) in the ear. Most of his book is devoted to a wellness program for treating TMJ. I have been trying the exercises to break the habit of clenching – jaw relaxation exercises, as well as improving my postural habits. Like everything, old habits are hard to break.
I think I will talk with my dentist. I want to explore all possibilities.
Hope the antiviral/Acyclovir helps also.
Denis-Thanks! I'm enjoying any good news I can get these good days. Having one good ear is definitely good, no great, news to me.
ReplyDeleteMy dentist made a special bite mold for me about a year and a half ago. At the time, it seemed my TMJ was contained on my left side which is my Meniere's side. I went through a couple months of wearing it and having some other work done to alter my bite. I was really bad to clench my teeth during the day. I started noticing that and then pursued the TMJ connection. By the way, before I forget, many people on the menieres.org site also seem to be diagnosed with TMJ. Interesting theory for sure.
Now I have the pressure and sometimes pain in my good ear. That's why I was so fearful of going bilateral. But when my ENT would check for TMJ signs on that side nothing would really happen. However, yesterday when he pressed on my jaw on that side, it was definitely sore. My ear still has that feeling of fullness. I'll try to remember to document any changes in that as I wear my guard. It may be a little hard to differentiate between what's working-antivirals or the guard. I think though that I will be able to tell some difference in the pain in my jaw at least.
I am intrigued by the information you quoted from Dr. Uppgaard. Sounds like that book is a great resource. I am also trying to work on relaxation and massaging my jaw and some other tender points along my neck. Stress is a sneaky little thing. Catching up to you in ways you wouldn't expect!
Good luck to you! In my opinion, with this disease, it is wise to explore all the possibilities. You never know which one will work for you!