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My meniere story

Posted , 6 users are following.

Marioscy
Marioscy

Hello people,

I have been diagnosed with menieres disease 8 to 10 years ago. Mild dizziness, headaches and severe hearing loss from the one ear, etc (but mild ones) . Got used to it. Thank god for medication. Tried to reduce salt (used low sodium instead), reduced my sugar ( well at least I tried to) and caffeine intake ( I used very little coffee, either green tea or decaf) and tried (some times not very successfully) reduce my stress. I was OK until 3- 4 months ago. Sever symptoms of all that comes with merrier. These attacks got very bad and reduced more my hearing in the bad ear but also reduced the hearing in the good ear. I feel my ears blocked and keep popping but still feel them blocked. Tinnitus fluctuates. And a new type of dizziness that never had. I used to feel like an earthquake was happening where I was ( this did not cause me to feel unbalanced). Now the new dizziness is like I try to stare at something but my eyes keep going round and round and this makes me feel very nausea and wants to vomit and not able to keep my balance (this the only way i can explain this). Then i feel "ok" lets say for a few days and then here we go again.

Does anyone of you experience something???

Can anyone tell me what to do to reduce or get ride of these???

Some Doctors here are completely worthless (Cyprus). 

Can you give me some advice on what to do. Maybe some herb remedies or machines i can buy to treat these MD symptoms

1 like, 28 replies

28 Replies

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  • just_john
    just_john Marioscy

    Posted

    Mariocy,

    I have had one similar episode.  My eyes didn't go "round and round" but involuntarily flipped rapidly from side to side and I couldn't make them stop.  I had the other symptoms too:  nausea, vomiting and impaired balance.  And when I tried closing my eyes, it flet like I was going to fall off my bed.

    My solution was 10 mg of Valium, which allowed me to sleep.  When I woke the eye movements were gone but i still had some nausea and, of course, the post Meniere episode fatigue.

    Valium has been helpful, even when the episodes are less severe.  I lets me sleep and when I wake, the symptoms are mostly gone.

    Good like.

     

    • Marioscy
      Marioscy just_john

      Posted

      I do not have valioum but i do have sleeping pills. Will they help?
    • just_john
      just_john Marioscy

      Posted

      I don't know about sleeping pills.  Valium is an anxiety management medication but it has anti-nausea properties.  Talk with your doctor about Valium.  Lots of Meniere's sufferers use it on an as-needed basis.

  • Marioscy
    Marioscy

    Posted

    People does anyone knows any solution when you get dizzy?
    • JMJ
      JMJ Marioscy

      Posted

      Hi Marioscy,

      I take meclazine(Antivert), and clonazepam for dizziness.  If I feel nausea along with it (which is 98% of the time!) I add Glycopyrrolate.  It's a good rescue combination for dizziness and/or vertigo , but I still have to sit or lie down.  It helps with the dizziness, but doesn't allow me to "carry on".....I don't know of any medication for dizziness that isn't also somewhat sedating.  ;-(

      Hope this helps.

      Take good care,

      J-

  • Marioscy
    Marioscy

    Posted

    People i would like to ask you a question. I have almost 80% hearing loss in one ear and 20% loss in the other ear. The "good" ear now feels like people are talking to me via a tube and some sounds are to painfull to hear them. I feel like the "stereo" of my ear is messed up (like the old radios that after a while you hear a strange noice when you increase the volume. But for me is for normal volume and for my ears). And i keep feel that the pop. 

    Would l need a hearing aid. I cannot continue like this because i sometimes at work do not hear what they are saying to me.

    • JMJ
      JMJ Marioscy

      Posted

      Hi Marioscy,

      I  have about  80% - 90% loss in my bad ear, and 15% loss in my good ear.  In the early days of my MD, my hearing loss sounded exactly like you describe:  It was like voices and sounds were coming to me via a small tin tube, and had the quality of the old fashioned Victrola....kind of static-y and difficult to discern the words.  I also had that ironic hypersensitivity to sound: Hyperaccusis.  Although I couldn't hear normal conversation or tell where sounds were coming from, some sounds hurt my ears terribly - I couldn't bear the pain, and found myself having to wear ear plugs at times.  Later, I came to find out that this was all normal with MD, and it comes and goes,, to this day.   

      Is your hearing stable, now? If it's fairly stable, then you should have good luck with finding a hearing aid that works for you.  I did a LOT of research on them, and came to the conclusion that Meniere's patients need the sort of hearing aid that gives you the most control over the volume, base/treble, and anti-tinnitus program (if you need it).  They have new technology that allows you much more control over your hearing aids via your smart phone.  Pretty amazing stuff.

       My hearing  is still changing, and so my doctor has discouraged me from getting hearing aids, yet.  Again, much earlier on, I tried them for a month, and one day they would help me, and the next day they made things  worse.  The audiologist was very frustrated  with me, and I didn't know enough to seek someone out who had at least some knowledge of the unique hearing challenges that come with Meniere's - It  was a real mess!  It turned out that because my Meniere's was so active, that my hearing and tinnitus were fluctuating quite a bit each day...They couldn't possibly set them to cover the range I was experiencing; my hearing was a moving target.  And they definitely didn't help with the hyperaccusis.  

      My advice would be to call several audiologists first.  Explain your situation, and see if you might come in and just meet them for a free consultation - This is just to see if the person is a good fit for you, and has some knowledge of MD.  The guy I went to see expressed such frustration with me, because he couldn't help me!  I'll never go through that again!  Here in the U.S., you're pretty much married to the audiologist from whom you purchase your hearing aids, for the life of the hearing aids.  MD people need lots of tweaks and tuning, so it's important to find someone who is very patient and interested in solving unique problems!

      It can't hurt to consult with a few audiologists before making your decision, and most offer a 30 day trial, free. Personally, I can't wait to get them.  I feel extremely isolated from life, with this much hearing loss.  I can empathize with your feelings, completely.

      Good luck on this journey. If you can find hearing aids that work, I'll bet you'll feel like a whole new world has opened up for you!

      Wishing you all the best,

      J-

    • Marioscy
      Marioscy JMJ

      Posted

      Thanks JMJ. Unfortunately here in Cyprus we do not have a lot of audiologists. Only one or i know off. My hearing also flactuates a bit. And feel alone all the time when this happens. What a terrible disease this Meniere is. People are exploring space and a simple disease is hard to fix.

      Very frastrating

      MA 

    • JMJ
      JMJ Marioscy

      Posted

      Dear MA,

      I understand how sad and alone you must be feeling. I'm so sorry that you're going through this, too.   And I SO agree with you, that MD is a terrible disease; It robs you of so much, so quickly! And yes, you would think there would be more answers at this point.  I don't think there has been enough attention paid to it.  I wish i had the brains and the youth: I'd become a researcher, and this would be my subject!

      I'm sorry that there is are so few resources available to you, in terms of audiology.  Still, perhaps you should make a call, or an appointment, and let them know about the Meniere's and the fluctuation in hearing, and ask if they think they could help you.  

      The fluctuation in hearing is the biggest issue for us, in getting hearing aids.  It means that you need a hearing aid that allows them to set a range of "programs" for you to pick from at any given time - So, as your hearing needs change, you can pick a different level of amplification, there and then. And it will probably involve some trial and error before you arrive at the right set of programs.  But at this point, if your ability to do your job is being so affected, then perhaps it's time to start investigating. Even if it's not perfect, perhaps it could make a positive difference.

      I sincerely wish you the best of luck.  

      Take good care,

      J-

    • JMJ
      JMJ Marioscy

      Posted

      Hi MA,

      I just sent you, via the Private Message option, several links to articles online.  They discuss the unique issues that come up when trying to fit hearing aids to a Meniere's patient.   (Whenever I've tried to post URL's in the past, they've disappeared and stayed forever in Moderator Purgatory.)  I found these articles to be very helpful - I hope you do, too.  

      If anyone else is interested, I'd be happy to message them to you, as well.

      Take good care,

      J-

    • Marioscy
      Marioscy JMJ

      Posted

      Dear JMJ hello,

      thanks for the consern. Can u pls send them in my email.

      alexandroucy at gmail dot (.) com

      I would appreciatly greatly.

      Thanks.

      Marios Alexandrou

    • JMJ
      JMJ Marioscy

      Posted

      It's on it's way!

      You're very welcome.

      J

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