New Poster w/ a-typical meniere's with a request for comment (Sorry long post)

Discussion in 'Your Living Room' started by ring, Apr 15, 2014.

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  1. ring

    ring New Member

    Hi everyone. I am a Newbie and found this forum. A lot of great information. And I want to say thank you in advance for all the support and advice the posters give on this board.

    I have been wanting to post since last week, but it took me a while to get my username approved. I want to relate my story and then ask a specific question that some of those readers with Cochlear Hydrops (a-typical Meniere’s) may be able to answer. As I had an “event” that seemed to fall outside what should have happened clinically.

    So my story.
    • 1. I was already deaf in the right ear from a schwanoma removed 5 years ago.
      2. On February 10, after feeling some slight pressure, I lost significant hearing in my left ear. I went to the ER and they diagnosed SSHL, which many posters know is serious but can be caused by an autoimmune reaction to a virus. I was put on Prednisone.
      3. Hearing improved a little over the next two days. I followed up with an Ontologist and he said maybe get a steroid injection, but it would be $7000.
      4. I went and got a referral from my PCP, and saw another Ontologist the next day, February 13. Thank goodness because I had now gotten much worse, with little volume and major speech recognition issues. I received a steroid injection. Prescription changed to DEXAMETHASONE 4 MG TABLET 4x, Anti Virals and Diuretic. And follow low sodium regimen
      5. By February 14, I had lost all speech recognition. (And when I say no speech recognition, I mean my wife could try to speak directly into my ear and understand nothing.) The physician was suggesting Cochlear Implants right out of the box.
      6. By February 16. I was effectively deaf. Whiteboards were bought and became the main communication device.
      7. During the week of February 17, I saw the Ontologist twice. I had gotten some volume back in the ears for “sound,” but no speech recognition. N-Acetyl-L-Cysteine, 600 mg - 3 times per day was added to the mix.
      8. On February 21, I got a second steroid injection.
      9. I had a follow-up on February 26, and there was significant improvement. I had lost a fair amount of low and mid-range frequencies, but high frequencies were good.
      10. On March 6, even more improvement. This was the first appointment where the doctor told me he thought it was Meniere’s. I must admit I was very cognizant of my sodium intake, but was not fully educated. From then on I became very strict. (PS, Anti-Virals and Steroids were complete, but stayed on Diretic and the supplement, N-Acetyl-L-Cysteine, 600 mg but only 2x per day.) I had no alcohol since the initial diagnoses, but he said he was not really concerned about caffeine.
      11. My follow-up on March 31, the doctor is all upbeat and is suggesting I get a “Baja” to have some bi-polar hearing
    So at this stage, everything is great. Not perfect, but hard to complain.
    • 12. Then on April 5, after accompanying my daughter to a robotics tournament, I lose all speech recognition in a matter of minutes after feeling some (not intense) ear pressure. And significant volume loss as well. This is much worse than my initial visit to the ER on February 10. No warning!! No slight losses of hearing, no fullness leading up to loss except right when it happened. No tinnitus.
      13. I am immediately put back on DEXAMETHASONE 4 MG TABLET 4x and by April 10, my hearing is back to where it was on March 31. The doctor says it happens. He rejects the idea of Anti-Virals. And says maybe I need to stay on a steroid regimen. I also stopped the little caffeine I was taking.
    So, here is my question to those with cochlear hydrops. Has this happened to you? That is, you were on the strict protocol for Meniere’s of Low Sodium, and Diuretic and, then bang, completely lost your hearing with no warning?

    Something does not sound right in that equation. If the answer is Meniere’s is weird and that is the way it may/can/sometimes happens then that is the answer. For me, I assume that every “big-event” kills more hair cells and I have only one ear; so, I do not want to kill any more cells.

    I welcome feedback and comment.
     
  2. cappelhans

    cappelhans New Member

    ring - i had a similar diagnosis of CH, SSHL + prednisone and other meds cleared it up. It flare up again a few months later, so I resumed all treatments and have been very slowly tapering them off over the last 9 months to see how I do.

    I'd suggest throwing everything you can at the problem - low so, diuretic, anti-virals, JOH etc - until you get your ear to a stable place. Then you can cease different components one-at-a-time (over many months), and watch how your ear reacts. It's the closest thing to a scientific method I've figured out for diagnosing which of the many treatments available will actually help your specific case of CH / MD. We all seem to be different.
     
  3. ring

    ring New Member

    Thanks.

    The otologist practically threw me out the window for suggesting more anti vitals. I wanted something because I did not believe I could have been so strict on Lo So and diuretic and have a major setback so soon.

    Unfortunate, but reassuring that somebody else had a bad flare-up so quickly.

    And I do guess we all react differently.
     
  4. CarolineJ.

    CarolineJ. New Member

    Hi Ring ... welcome to the forum. :)
     
  5. james

    james ''Everywhere I go there I am'' GS

    Welcome Ring.
    What a lousy time of it you have been having.I agree with cappelhans do everything you can to prevent it happening again.I would make sure that I had access to steroids if needed again.Important to get them right away.

    I have had a couple of times where hearing went in both ears.I know it 's scary especially if you only have the one good ear.One time it happened when it was really hot out and another was in December,after flying with a cold.

    As you may have found out from reading here there is no rhyme or reason to this stupid condition.There are some theories out there that sudden loss is migraine activity.Migraine can be there without the headache.There is a really good thread on it in the database.

    Hope your good ear stays fit.Most people have a tough time getting their docs to prescribe the antivirals. Sometimes a GP is more likely to let you try them.
     
  6. kraunque

    kraunque New Member

    Welcome Ring!

    What a terrible experience you're having! I agree with the advice of the posters above. We don't have to give up as quickly as our doctors sometimes give up on us. Try John Of Ohio regimen, look into dietary triggers--something could work for you.
     
  7. ring

    ring New Member

    I was just reading column by Dr. Timothy Hain and he wrote:

    Note that it is not the overall level of sodium that is important, but whether or not it fluctuates. It is not necessary or wise to lower your salt intake to amounts barely able to sustain life. We do not encourage use of 1 gram sodium diets. Rather the goal is to keep sodium levels from fluctuation.


    I am wondering if I went overboard on the low sodium and actually triggered an event. Maybe? Or does fluctuating down not do anything? I am certainly not spreading the sodium evenly during the day. Which I will try to do better.
     
  8. Donamo

    Donamo Guest

    Yes, there have been other posts on this site emphasizing that it is the fluctuation which matters most. Personally, my take on it is that if you don't eat prepackaged foods ( soups, smoked meats, etc) then your sodium intake level is fine.
     
  9. RedBird11

    RedBird11 New Member

    I second trying the John Of Ohio regimen. I, like you, have a-typical Meniere's and have found a lot of relief just from the Lemon Bioflavonoids alone. I plan on adding more of the regimen soon to try and prevent any progression.
     

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