Meniere's Disease

Discussion in 'Support' started by Teri, Jul 19, 2014.

    1. Dominic1955
      Artistic

      Dominic1955 Member Benefactor

      Location:
      Waverly, Pennsylvania
      Tinnitus Since:
      4/2/2016
      Cause of Tinnitus:
      Idiopathic hearing loss
      Thank you
       
    2. AUTHOR
      AUTHOR
      Teri
      Caffeine

      Teri Member Benefactor

      Tinnitus Since:
      4/2014
      Dom, hang in there. Please don't get discouraged. @glynis is amazing support and I will try to keep you encouraged as well.
       
      • Winner Winner x 1
    3. Dominic1955
      Artistic

      Dominic1955 Member Benefactor

      Location:
      Waverly, Pennsylvania
      Tinnitus Since:
      4/2/2016
      Cause of Tinnitus:
      Idiopathic hearing loss
      @Teri , I was hoping to have cochlear hydrops but last night I had a severe vertigo attack, I was sitting on my couch and it was sudden no warning
      I laid on the floor and vomited profusely and had drenching sweats. Lasted one hr and I was able to walk at around 330am.
      It's menieres I am not sure what my future holds.
      Depressed
      Dom
       
    4. AUTHOR
      AUTHOR
      Teri
      Caffeine

      Teri Member Benefactor

      Tinnitus Since:
      4/2014
      From what I understand...everyone presents differently. Some attacks occur rarely while some folks get them more frequently. I have a friend who has had Menieres going on 20+ years and she indicated she only had one drop attack. She has vertigo that came around once or twice a year. She doesn't seem bothered these days.
       
    5. Dominic1955
      Artistic

      Dominic1955 Member Benefactor

      Location:
      Waverly, Pennsylvania
      Tinnitus Since:
      4/2/2016
      Cause of Tinnitus:
      Idiopathic hearing loss
      Thank you Teri, just having bad 4 weeks and hoping that I don't continue to have severe vertigo
       
    6. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Dominic1955 ,
      Are you on any medication for Menieres?
      Love glynis
       
    7. Dominic1955
      Artistic

      Dominic1955 Member Benefactor

      Location:
      Waverly, Pennsylvania
      Tinnitus Since:
      4/2/2016
      Cause of Tinnitus:
      Idiopathic hearing loss
      @glynis I am taking diuretics and Xanax to sleep, other medication not available in USA
       
      • Hug Hug x 1
    8. MattL
      Jaded

      MattL Member

      Location:
      Australia
      Tinnitus Since:
      10/2009
      Cause of Tinnitus:
      Meniere's

      I've had it for 8 years and it certainly hasn't got any better, but I have become a bit more resilient to it. Vertigo attacks are definitely not as severe and consequently I very rarely vomit with it now. The onset of drop attacks has made life very uncomfortable though and have resulted in depressing lifestyle changes. The one thing that always seems a constant is the tinnitus and gradual hearing loss.
       
    9. MattL
      Jaded

      MattL Member

      Location:
      Australia
      Tinnitus Since:
      10/2009
      Cause of Tinnitus:
      Meniere's
      You could try the John of Ohio supplement regime. I'm sure it has helped me somewhat. It absolutely is not the "cure" as some people would have you believe, but it may help repress symptoms to a degree.

      Some things that have either done nothing for me or made things worse (who can tell) are diuretics and pycnogenol.
       
    10. Dominic1955
      Artistic

      Dominic1955 Member Benefactor

      Location:
      Waverly, Pennsylvania
      Tinnitus Since:
      4/2/2016
      Cause of Tinnitus:
      Idiopathic hearing loss
      @MattL
      Thanks for responding Matt, did you consider surgery to improve your vertigo?
      Dom
       
    11. MattL
      Jaded

      MattL Member

      Location:
      Australia
      Tinnitus Since:
      10/2009
      Cause of Tinnitus:
      Meniere's
      No way.
       
    12. light rain

      light rain Member

      Location:
      Eastern TN
      Tinnitus Since:
      2010
      Cause of Tinnitus:
      unknown
      Can Menieres start or only have HF hearing loss? What little I've read seems to be LF but my pattern seems to fit except for that. Including intermittent ear pain.

      I've been trying to stay away from electronics - not sure if it is the scrolling or if it was the weather but I was not feeling well (dizziness,headache).

      My T has also changed. It is lower in tone but as loud. Still higher pitched but now not a sound I can seem to find a way to distract. Even driving in traffic with a window open and radio I can hear it. Really bothersome along with a faint Morse code sound going like crazy esp at night. All focused in one ear.

      I wonder too if lower in tone T means possibly more hearing loss.

      Lynn
       
    13. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      this sounds like lyme
       
      • Agree Agree x 1
    14. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Hi @light rain ,
      I have menieres and high frequency hearing loss but do have LF loss now too !
      Love glynis
       
    15. light rain

      light rain Member

      Location:
      Eastern TN
      Tinnitus Since:
      2010
      Cause of Tinnitus:
      unknown
      Thanks Glynis. I'm not sure why Dr was so quickly dismissive about Menieres. Does the weather seem to affect it at all? The weather got hot and humid and it really seemed to bother me. I get so tired too when this happens.

      Lynn
       
    16. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Yes for me it does !
      Never mind the sun always makes me happy so my ears can just do what they want and I'll carry on singing ...
      Love glynis
       
    17. light rain

      light rain Member

      Location:
      Eastern TN
      Tinnitus Since:
      2010
      Cause of Tinnitus:
      unknown
      I am not a sunflower :).

      Its the opposite for me.

      Take care
      Lynn
       
    18. Gin
      Alienated

      Gin Member

      Tinnitus Since:
      July 2015
      Well I begged my doctor to do a Lyme test. He finally did after tons of resistance and it came back negative
       
    19. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      there are a lot of cases of false negative, just saying! D:
       
    20. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Ears so loud and so sick, not sure if Menieres flair up .
      Doped up on strong antihistamines for Menieres ..hope tomorrow is a bit better than today.
       
      • Hug Hug x 2
    21. Gin
      Alienated

      Gin Member

      Tinnitus Since:
      July 2015
      Yea I know. I went to my primary today. I had a bad spell on Sat. I'm not convinced it's menieres. It felt more like a seizure. Moves up and down my body numbing my muscles making them weak. I did video tape my eyes during it. They jumped around some. I was dizzy but still not convinced. Had really bad chest pains and could hear the noise in my head blarring too.I had a HUGE headache after and slept alot. My primary did an EKG it turned abnormal. I have been sent to a cardiologist to have a stress test next month. So no peace of mine for me just more questions. I brought up Lyme disease and got the whole its rare in Tennessee etc. She took blood work and is sending me back to my neurologist to possible have another brain MRI. The last one was three years ago. Oh and also I broke out in a circular rash all over my body. I figured it was hives. She said no not hives. Not sure what it is. More concerned with the heart thing than the rash. I know it will be hard to sleep once again.
       
    22. Gin
      Alienated

      Gin Member

      Tinnitus Since:
      July 2015
      Well I guess I'll jump in here too. I was diagnosed a couple of years ago. I still doubt my diagnosis. I do have low frequency hearing loss in my right ear and have tinnitus that comes and goes. I get hypercausis that comes and goes too. I get the vertigo every now and then too. Here's question, I do have some symptoms that I don't think are Meniere's related. Like chest pains, strange rashes, numbness on my face, tingling feeling on side of my head. I went to the doctor yesterday. I do have an abnormal EKG and am scheduled to do a stress test next month. She thinks (my primary) that these may be more seizures than Meniere attacks. I did do the balance testing at Vanderbilt where they said two organs in my right ear did not respond. When asked what might cause that I was told Meniere's disease. I did see a world re-known specialist who lives here in TN. He had no bed side manner and was just like yea you have it etc. When I told him about the numbness on my face chest pains etc. he said no those are not Meniere related don't know what that is. Very helpful right. Anyway I guess my question is when ya'll have "episodes or attacks" how does it feel to you. To me, my warning sign is I get real cold I hear the loud blarring noise in my ear I get dizzy I feel myself shaking internally then I feel this wave that goes up and down my body. my muscles get weak. Sometimes I lose bowel control. My eyes kind of roll a little. I may go through this about 3 to 4 hours feeling coming and going every 10 min or so. The next day I have a huge headache and am tired. I would really like anyone/someone's imput on what they think.
       
    23. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      Gin im sorry that you are having a hard time!!
      i hope you get more answears soon, please keep us posted.
      you are in my prayers.
       
    24. Gin
      Alienated

      Gin Member

      Tinnitus Since:
      July 2015
      Oh and I broke out with a rash all over my body. They were in the circular form. I thought they were hives. My primary says no. But had no explanation for what they could be.
       
    25. Gin
      Alienated

      Gin Member

      Tinnitus Since:
      July 2015
      Thanks for the prayers. Well I called my primary Thursday morning. I had broken out all over my body and was feeling horrible. She told me to head to the ER. So I went. They did a full cardio workup. Everything came back good. The EKG was abnormal and was told to follow up with my cardiologist. Which is already scheduled for the 19th of July. She could not figure out what the rash/welps were. She said it was not hives. Possible a reaction to the Valtrex I started taking about a month ago. But she was still unsure about that. She gave me Benadryl and some stuff for acid reflux. When I got home I started thinking about the corolation between the hives and the Valtrex. I did some research and found that Valtrex is made up of Hydrochloride. What I am highly allergic to. It started to make sense. Last time I had the tingling of the face and the side of my head plus the seizure things it was when I took Hydrochloride as well. Needless to say I am relieved. I quit taking it immediately. Took the Benadryl and the Pepcid AC stuff and started feeling better. The hives are almost gone today. YAY. I am a little upset with my Neurologist though. He knew I was allergic to Hydrochloride but prescribed it anyway. So it boils down to, I have Meniere's but the attacks I experienced were not Meneiere's related more seizures due to that medication. I possibly have some acid reflux stuff going on. Which I seriously don't doubt. Cider beer, wine, spicy foods, etc. My new primary, which let me say, is GREAT. Finally a dr who listens and follows up, wow. Has talked about keeping me on a acid reducer med for a few months. If it doesn't get better, doing a scope of the esophagus (which doesn't sound pleasant ha) and checking things out. At least I feel as if I have some answers. Guess, I will get back on the Lipoflavnoids today, to get the tinnitus back down. It works everytime. They are so expensive though. After about 4 days of taking them though, the sound leaves completely. I should take them as a preventative. But I'm stubborn. After the sound is gone for a month or so I stop for about 3 weeks. Then it comes back. Well, I guess I can say, Meniere's sucks, but Meniere's plus seizures and unknown stuff was even worse. I feel better now that I am back to just Meniere's. ha
       
      • Like Like x 1
    26. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      Gin, im super glad you found a new doctor!!!
      sometimes i dont understand why doctors are so cruel and would prescribe things that are bad for you.
      i hate it, i hope this works better for you.
      keep us posted, btw what do you mean with the sound gone?? does your tinnitus goes away completely?
      you dont listen to it even when cover your ears?
      would like to know.
       
    27. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Wow @Gin ,
      You have had a bad time and great to hear your feeling better now....love glynis x
       
      • Hug Hug x 1
    28. Gin
      Alienated

      Gin Member

      Tinnitus Since:
      July 2015
      Yea it comes and goes. But usually when I take Lipoflavnoids after they build up in my system, it disappears completely. Yesterday, my ears were pretty quiet too. But I haven't taken them yet. They are sooo expensive. Like $40 a bottle, but for me they work.
       
      • Like Like x 1
    29. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      Im so happy for you, you get to experience silence!!!
      i have days where my tinnitus is not very audible (only at nights)
      but even those days when i cover my ears i still can hear that (ttttttttttttttt)
       
    30. Gin
      Alienated

      Gin Member

      Tinnitus Since:
      July 2015
      Well no tinnitus today but severe Hypercausis and plugged ears. UGH sucks. Last night I had another attack. Very dizzy, loud roaring of ears, palpitations, numbness of face, vertigo, etc. Took Valium and Promethazine. It knocked me out thank God. Yesterday I was doing month end billing and the night before I only had 3 hours of sleep. I'm guessing that is what brought on this round. I'm at work this morning. I got through the majority of Month End so some stress will be alleviated. Day is going pretty fast. Gonna try to get 7 hours of sleep tonight. Maybe catching up will help. The Lipos seemed to have helped with the humming but may be what caused it. Or perhaps that I had earphones in most of the day yesterday listening to music. When I talk today It sounds like I'm underwater too. Hoping this will pass soon and not drive me bananas.
       

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