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Best options for bilateral meniere's?

Discussion in 'Your Living Room' started by Cricket, Apr 2, 2018.

  1. Peter rabbit

    Peter rabbit New Member

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    Nov 23, 2018
    So I just finished with my doc appointment and the disease is now bilateral. So doc is putting me on 10 mg prednisone once a week and told me to continue on low sodium diet along with 50 mg htz water pill. He said my left ear which diseased first is doing great. Left ear has leveled out in the moderate hearing range. Their isn't anything that they can do since I had the nerve section on left ear expect prednisone. Doc did tell me that they see an immune respose in neniers disease by the way. which is your immune system attacking the inner ear tissue which cause the fluid retention. Reply back please with input.
     
  2. ckdk

    ckdk Member

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    Guys, what symptom that you first notice in your good ear before becoming bilateral? is it vertigo/ hearing loss/ tinnitus?

    thanks
     
  3. sjw111

    sjw111 Member

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    Peter:

    Lots I could talk about. I know you know this but 10mg of prednisone is a tiny dose. When I lost the hearing in my last ear my doc put me on 60 mg a day for 10 days trying to shock it back on line. (didn't work) But I understand what your doc is doing....just trying to take the edge off an inflamed ear due to autoimmune disease. (often the case when bilateral) Predisone in larger doses or for long periods of time is very dangerous. So he is being pretty conservative. i also have another autoimmune disease ...ulcerative colitis. And for that when it flares I get 40 mg a day for 30-45 days. So again you can see you have a small dose. Do read Tim Hains writings on low dose gent protocol that is designed to slightly dumb down the vestibular system with no adverse reaction. He uses it in cases like yours if there are spin attacks and you have to try something while still being safe. Also as I mentioned on this thread....would be very interesting to do a VHIT test....to see exactly how your vestibular system is working by clinical criteria in each ear individually in a very objective and quantifiable way. It would tell you if you are somewhat burned out on the one side and if the VNS was total on the other. In my case on my laby ear it has been dead ever since after that....on the other ear my vestibular system actually tests out (VHIT etc) as very active and healthy....but dizzy balance issues still diminished over the years (after bilateral dx). Most people think burn out is your vestibular system dying or dead via mother nature....that can be somewhat true....but also others like me with reduces symptoms but no reduction in function. Very few people totally "burn out" by clinical criteria. Now of course I am still deaf in both ears. Anyway. Sorry for rambling. Not much structure to my paragraph. But our cases are a lot alike. Holler back if you want more. Peace.
     
  4. sjw111

    sjw111 Member

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    CK- Fullness, hearing loss, ringing, noise....I didn't have a vertigo attack from my second ear until some years later. But then it all hit ....full textbook Menieres. But the good news is that its not a death sentence. I have lived with MM for over 40 years. And bilateral about 30. And life is good. Wishing you the same.
     
  5. Peter rabbit

    Peter rabbit New Member

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    Nov 23, 2018
    Sjw111, thanks for the response. I am interested in knowing what exactly does this low dose gentimicin treatment do to my vestibular system? I am looking into going out on state disability retirement in my law enforcement career after nearly 15 years of service since the meniers has gone bilateral. The whole point t of the vns was to keep me working. So, would that low dose gentimicin treatment keep me functioning safely in law enforcement or would it make it harder for me to balance. I'm really concerned for my safety now and just wondering if their is any hope at all for me to keep me working or is it time for me to punch the card and do something else. The hearing aids work fine so I can cope in that area. It does get tough with the flutuations with the aids in. It sounds like amplfied noise under water. I cope though. It's the vertigo attack I can have. So unpredictable. That's my concern. If I had that low dose gent shot would it deaden my total balance system?
     
  6. sjw111

    sjw111 Member

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    I don't want to hijack Crickets thread here. Hopefully our discussion will help everyone that is interested. ....but Peter very interesting again. I spent my early years in a patrol car. So I understand. My experience there has never left my blood. Good stuff. I'm with you man. I am not a doctor but my understanding is that low dose gent just slightly dumbs down the vestibular system in the treated ear. And that can reduce or stop the violent spins attacks. I cannot speak first hand because I have never done it. In my non laby ear i just let it take its course. It was tough with spins and hearing loss (now deaf). So my route would be contradictory to pretty much any career including law enforcement where both hearing and balance are so very critical. So it just seemed to me that in your case low dose gent may be an option. My doc is not a gent sort of doc. He is more surgery. But when I asked him if we could try it along the way he said he would agree since he didn't think it would hurt anything. So maybe a good thing to ask your doc. Dr Tim Hain was kind enough to talk to me via email about dosing the low dose protocol. He is a great person to see if you need a doc or need a second look at your situation. Your last question is a good one....yes, gent will kill your balance system (aka a chemical laby) if you do it in sufficient dose levels frequently enough. But the low dose protocol is designed to keep you shy of that reality. But of course you never know the outcome. But a great choice if you to try first you ever head toward a laby in that final ear. One final note...some have asked over time ref if its your last ear....why not use intermuscular administration of gent....no need to stick the needle in the ear....just take a more systemic approach to kill off the last one. Cause you can't hurt the other one any more since its already dead. The answer is you SHOULD NOT use gent systemically. Because it is toxic to the liver. If you need to use a systemic destructive drug for the vestibular system then strep is the way to go. But not sure how much that is being done now days either. Again Hain is a great resource for all of this dialog.
     
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  7. Peter rabbit

    Peter rabbit New Member

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    Nov 23, 2018
    Ok I'll check into all this info
    Thanks
     
  8. Jsnider

    Jsnider Member

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    Oct 17, 2018
    Sjw111 - I have very politely emailed Dr. Tim Hain with a couple of questions about low dose Gent. But he has not responded either time. I even said I would fly to Chicago. What is the secret you used to get him to reply to you? I know he is very good and is the biggest proponent on low dose Gent. Please help me. Thank you.
     
  9. sjw111

    sjw111 Member

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    Jsnider_ Cant say for sure on the email connection. But do be sure you are using his email address not the general one for his practice. And if you are serious....then let him know you want to arrange a time to see him in clinic for XYZ (evaluation, testing, whatever). Also give him a few sentences (not too much more) of the facts of your case. Then if you want to ask one or two questions (again limited since its a first contact) about if you situation might benefit from a low dose gent protocol....or what he thinks in general about your situation. He is a pretty quiet reserved type of guy....very much to the point.....very nice...for sure like all docs best to go prepared with your specific list of questions. For me he gave me a lot of info I never heard from my more surgical based doc. He talks a lot about being sure you have done a betahistine trial, autoimmune realities for bilateral patients, gent of course, good testing, (which he does most of in his office...think he now may be using Northwestern Hospital for rotary chair) etc. If you are a patient he is also good to help you find good care close to home. So while no one doc is perfect...he is a great second opinion doc if you are traveling to Chicago....and awesome primary dizzy balance doc if you live around Chicago.
     
  10. Jsnider

    Jsnider Member

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    Oct 17, 2018
    Thank you Sjw111 - I am using [email protected]. Is that the right one? The rest of your advice I did follow. Thank you so much. If the low dose Gent could help with minimal side effects, that would be the best. That’s what I’m trying to figure out. My best to you. I would set up an appointment as well.
     
  11. solari

    solari MM.org Janitor Staff Member

    Admin Post
    You may be better off calling his office. His phone number is in our database of doctors here:

    Timothy Hain, MD
     
  12. Jsnider

    Jsnider Member

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    Oct 17, 2018
    Thank you. I will try and phone him tomorrow. I would fly to Chicago if he thinks under my individual circumstances that he could help me. That is why I am giving him some details behind my situation. His feedback would be most helpful. I'm just not completely convinced that my doctors in LA are considering all options and being creative. Thank you again. I will call.
     
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  13. Jsnider

    Jsnider Member

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    Oct 17, 2018
    Ray - where can I find your database of good doctors in the LA area? Is the House Ear Institute where I am going on the list? Is USC Keck where I am thinking of switching to on the list? Would love to know who the best in SoCal is in the event that Dr. Hain and I don't ever hook up.
     
  14. solari

    solari MM.org Janitor Staff Member

    Admin Post
    The database is on top of the forum under "Database" and it's also on the forum front page. : )

    Go there and click Doctors. It only lists docs/specialists recommended by folks on this forum so there are not many but there are a couple in California, including Los Angeles area.

    Ray
     

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