Advice Please

Discussion in 'Your Living Room' started by ollaspinosa, May 2, 2018.

  1. ollaspinosa

    ollaspinosa New Member

    3
    0
    1
    May 2, 2018
    Hello folks! So nice to find all of you here and, wow, such a wealth of information. And yet, I'm still a little confused.
    I started getting vertigo episodes back in August of 2016, and it got worse from there. A few months later, I got pregnant, the symptoms continued, so I visited the ENT who said, there's nothing we can do since you're PG. However, I did start a low sodium diet. In January I also started the JOH regimen. I had a miscarriage mid-January and then had the last of my vertigo attacks in February. In April I got pregnant again, and then gradually quit my low salt diet. I had no vertigo attacks for almost a year, until right before I had my baby end of December. After that, it gradually got worse and worse with more and more attacks. I went back on low salt with no effect. Now I might have 2-ish attacks a day and then go a few days without any and then get a whole bunch in a row again... I have no idea what the trigger is.
    Well, my question is, I have an appointment with an ENT Friday and I have no idea what to tell him or ask him. I'm thinking I should push the antivirals as it seems many of you have had success with that. However, which one and what dosage and for how long... and what if he says No. Where do I go next?

    THANKS all of you for your help!!
     
  2. Clare

    Clare Active Member

    387
    79
    28
    Mar 31, 2018
    When I was new here, not too long ago, this site was suggested to me:
    https://www.mindovermenieres.com/menieres-disease-treatments/ (Thanks, Pupper!)

    In your position, I would first go to healthgrades.com to verify your ENT's specialty or find a neurotologist, and then check whether conditions treated include Meniere's disease. Maybe you've already done that. Next, I would go to the doctor with the list of treatments on the page linked above and ask what his/her treatment plan will be and why. If a type of treatment (e.g., antivirals) is not part of it, have a discussion with your doc. If you can't feel confident and trusting with the answers you get, check with another neurotologist.

    Best of luck to you!
     
  3. zotjen

    zotjen Member

    183
    8
    18
    May 12, 2014
    Other than vertigo, are you having any other symptoms - tinnitus, fullness, hearing loss, etc.?
     
  4. ollaspinosa

    ollaspinosa New Member

    3
    0
    1
    May 2, 2018
    Thanks for the advice!

    Yes, I"m having or have had all the classic MM symptoms. Fullness, ocean sound,... I had tinnitus quite a bit back in the beginning but often was able to get rid of it by guzzling a good bit of water. That took care of it in about an hour. Now that the disease has come back, I seem to have a lot more of the cloudy head and dizzy feeling throughout the day. The vertigo attacks used to leave my ear with better hearing for a short while after but now it doesn't seem to change it. The ear is quite deaf. It's taking longer to get over the attacks also. Not sure why the disease decided to come back.
    I'm a part time afternoon fourth grade teacher - I've never had an attack at school yet but the kids are quite scared that one of these times I'm simply going to fall over and start puking. :D
     
  5. marie

    marie Member

    263
    0
    16
    Jan 6, 2017
    Olla
    How'd it go at the Dr.?
    I too have gotton relief from the first antiviral that my Dr. prescribed - Acyclovir 800 mg, starting with 3 tabs a day for 2 months then 2 tabs a day except when I feel stressed. Dr. said take 3 tabs a day when feeling stressed. He also put me on a low sodium diet which I'm convinced I feel better when I follow it.
    My best to all.
     
  6. ollaspinosa

    ollaspinosa New Member

    3
    0
    1
    May 2, 2018
    Well, the doctor visit went as I suspected. My hearing test was way worse than a year ago which pretty much cemented the diagnosis as Meniere's - no surprise there. He prescribed Diazide, said to stay on low sodium diet (he would not give me a number of sodium mg to aim for. Just told me not to eat a Big Mac and fries) and said if it didn't work we'd go to steroid injections into the middle ear.
    When I asked about treating with antivirals he said he'd never heard of it and kindly explained why that was a completely silly treatment. He was nice about it all, but the whole time, he seemed to be kindly explaining away my questions about other options. I told him how my uncle had tried the JOH regimen and successfully gotten rid of any symptoms. (He's now been MM free for a couple of years.) I'm a bit frustrated but I think I'll try the diuretics and continue on with the JOH regimen. I've also upped my Lysine dose to 3000 mg a day and will keep that up for a few months to see if it helps.
    Does anyone have advice as to how I would be able to tell if the Lysine is helping? I was thinking I would keep up that higher dosage for a few months and then try to ease off the Diazide and see if symptoms return. How does that sound? and then if the Diazide doesn't work, I'm going to push to try antivirals.
    I come from Grand Rapids, MI - a relatively large city - how is it possible that these docs have never even heard of these other treatments? He knew nothing about them.
     
  7. June-

    June- Well-Known Member

    1,789
    58
    48
    May 12, 2014
    I wonder if he would also tell Dr Derebery and the other noted specialists who prescribe it why they are silly geese thinking such a ridiculous thing would work? Do not rule out talking to the family doctor about trying antivirals if you want to give it a try.
     
  8. teesdale

    teesdale Active Member

    291
    30
    28
    Oct 24, 2014
    Your approach sounds pretty good to me. I'm not sure how long you've been on JOH but it can take a few months to start working. Also, June's point about trying your family doctor for the antivirals is right on. I finally had to confront my family doctor to get on the A/Vs and I'm certainly glad I did as I am coming up on 10 months of symptom-free living. Of course, that's if your current approach doesn't work.

    Best of Luck.
     

Share This Page