Hi again, all. Went in for my infrared VNG test today at House, followed by another appointment with Dr. Jennifer Derebery. The test was pretty tough on me. Lots of eye stuff to begin with, then the water tests--cold, warm, ice cold, having to keep looking up at all times. Sent my tinnitus through the roof. But then came the appointment with Dr. Derebery. Turns out that my Menieres was even more severe than I had thought. And that turned out to be good news! Apparently, the illness has "progressed" so far in my right ear that, to use Dr. Derebery's words, "you basically have had a labyrinthectomy in your right ear without surgery." What she meant was that my test showed I had no balance function in either my left ear, where I had a surgical labryinthectomy in 2003, OR in my right ear, where I have never had any surgical intervention. Why was that good news? She told me I would never again have vertigo attacks or drop attacks with nausea, because I had no balance functionality in my inner ears at all. I have to rely on my eyes, my brain, and my physical sense of positioning for balance. She told me that all I could and should do to address my issues were the following: (1) adhere to a physical training regimen she had prescribed with Theresa Englander, which I have been doing at home for a month and will do some more in-office after the New Year; (2) keep my left ear cochlear implant adjusted as precisely as possible every three months, which should help not only with hearing but with tinnitus as well; and (3) instead of the Lemon Bioflavonoid I have been taking as part of the JOH regimen (she did not address the regimen overall, but approved of all the components of it I have been taking), she prescribed a non-FDA approved, but FDA certified as safe, prescription for something called LBC Complex plus GW, which one can obtain at any pharmacy capable of compounding prescriptions. I filled it at the pharmacy at the House Ear Clinic itself. You take two of the pills a day, one after breakfast and one after dinner. I will be interested in seeing if there is any difference. The pills are not cheap ($52 for 100), but if they help with the tinnitus, well worth it. Anyway, thought I would pass this along. I really think Dr. Derebery is the best Menieres doctor I have seen. She even explained why I get dizzy when I look up--for people with Menieres or migraine headaches, looking up causes calcium crystals to detach in the inner ear, and that is the source of the dizziness. No one had ever explained that to me before. Again, if you can manage to get to House in Los Angeles and see Dr. Derebery, I think you find yourselves pleased. While, as I have noted, she is business-like and analytical, it is clear that she also cares a great deal about her patients. I felt that very strongly today, and needless to say, that helped too.
Great post BR as always! Did you mention anything about why alcohol and wine make you feel better? I had a six pack of Stella Artois the other night and felt great. PS: does she think your balance will get better as you adapt?
wonderful post! so glad you are getting the right information and the proper care for MM. Very happy for you!
Thank you for sharing that. What a wonderful thing to know what is going on and have a good plan for you. Enjoy!
Thanks, all. To Bulldogs: she said she didn't favor alcohol as a control method, but said that it DID operate to dampen brain function including awareness of tinnitus and balance issues. So while not an endorsement at all, she explained why it seemed to "work" to help me. As to improved balance over time, she said it should with the physical therapy regimen. She also expressed regret that there was nothing else she could really do. Nothing chemical or surgical, just the exercises and possibly the supplements which may help with the tinnitus. I can live with that. Knowing the horrible vertigo and drop attacks are gone forever is a huge deal, even if my hearing is shot and I still have the other Menieres issues. I think she uses very different approaches and treatments with people who have less severe Menieres than I do. Particularly those who have some balance function in one ear but not the other, which is apparently what leads to those nasty rotational vertigo spells, drop attacks and nausea. But that is based on what I have read here from her other patients about her use of anti-vitals and anti-allergy treatments. I had done both many years ago with other doctors, to no effect.
Very happy to hear you've had a positive experience. I think the House clinic is a very special place - everyone I've met there is simply outstanding. All the best to you sir. John
BR, did dr d happen to say or do you know if the LBC Complex plus GW, which one can obtain at any pharmacy capable of compounding prescriptions is thought to be helpful for tinnitus which is not due to MM? And does it require a prescription! I am thinking of a relative who suffers with it but has never had mm.
June-- Dr. D did not say whether it would help with tinnitus for non-MM sufferers, but my guess is it couldn't hurt. And she wrote me a prescription for it, so I do not think it is available over the counter.
Thanks for the House Clinic news. I am running out all my options with my medical provider but may make the trip down to LA in January. Need to call for cost estimate. Anybody know?
For just a visit or for allergy testing? Without any insurance coverage? I asked for this before i went but it was 7 years ago. They will give you the numbers but it depends on what you have planned.
Ok Thanks. Getting an allergy test through Medi-Cal here with Kaiser..100% paid for. See what happens with that then look at House clinic. My PCP denied me tests for fungal even though I lived in a mold infested cabin for 4 years where these symptoms developed. Does the good Doc there also look at fungal influences in her testing? Thanks!
good luck buddy menieres is a bitch been fighting it over 25 yrs let us know how that new product works for you