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Meaniers

Posted , 6 users are following.

jonese98459
jonese98459

So all test from ENG said it is MD. I already knew that as I was diagonsed in my 30s. 63 now. I moved and went to new doctor he did not believe that I had it until tests. Hearing was bad in both ears . Anyway this is my problem I have really bad anxiety with the disease. I don't have vertigo attacks very often but my balance is horrible. Very dizzy when I bend over or look side to side. Balance issues never go away I have been like this for six months now after a couple of small vertigo attacks. Is everyone different I read where people have violent vertigo with throw up. I wake up nauseous but that is it. My anxiety is through the roof and I can not sleep. Any suggestions and do I sound like anyone else.

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  • tanney
    tanney jonese98459

    Posted

    Hi Jonese....unfortunately Meniere's Disease brings anxiety which will likely get worse on it's own if left untreated.  To address the anxiety at the level you have you will likely need to see a therapist who can help you cope and can provide anti anxiety meds.  There are a lot of different meds out there that will help you function better. 

    Now, to address the MD...what meds are you taking to calm the dizziness and balance problems?  All MD patients need something that works for them.....Betahistine, diuretics, steroid injections...what does your ENT have you on?

  • daniel_43572
    daniel_43572 jonese98459

    Posted

    That sounds just like me my anxiety makes it a lot worse I will not even leave the house hardly it has really made life miserable!!
    • jonese98459
      jonese98459 daniel_43572

      Posted

      Sorry about that Daniel it is just a horrible way to live.  What are you taking they have me on xanax at night for anxiety.  ENT does not want me to take diuretics. I will take the meclizine and it helps some but makes me really sleepy i I take it during the day.  I started on my own some allergy medicine but do not know if that will help and of course I am watching my salt intake.   I am going to therapy and counseling next week. I do not think the doctors really know much about this disease.  Do you have Meaniers?
    • daniel_43572
      daniel_43572 jonese98459

      Posted

      Sorry you're having so much trouble with yours Jonese. Yea unfortunately I do have meaniers in my left ear. I was first diagnosed in 1998 I had steroid injections and I we for a lot of years with no problems of any kind I lived a normal life and worked every day then one night at work bam it hit me in 2013 and it's been down hill every since. I had the steroid injection again in 2013 but it didn't help at all no diuretic for me this time because my blood pressure stays on the low side so they took me off them the anxiety is the worst part about it this time. They gave me Valium to take but I can't tell it helps any so as of right now I'm not taking nothing at all. I have completely cut off the outside world I don't go anywhere but to the store right up the road from my house I don't even go to my kids ball games or nothing anymore I haven't been to a store shopping in a year I order online have it shipped to my house. I don't have the really bad vertigo like some thank god for that but I do have the ringing fullness and off balance and some really bad ear pain. The worst part is the anxiety when I do try to go somewhere away from the house I get dizzy shacky and can't breathe so I just stay at home to keep from getting that its bad. I do try my best to watch my salt and do ok with that since all of this started I was at 265 lb I went down to 135lb now I'm back up to 170lb so it has took a toll on my body in many ways. I hope you get yours Better. 

    • jonese98459
      jonese98459 daniel_43572

      Posted

      Hi Daniel after reading your response we sound so much alike in what is going on with our bodies.  I hate the fact it has taken so much away from me with my children and grand children it is just ridicules. But like you the balance and dizziness and anxiety have just got control over me.  I did not like the Valium so I got .25 (very small dose of Xanax) and it works really good to help me sleep at night. You might want to try it at least at night an hour before you go to bed it will rest your mind.  I know how much high anxiety can make it so much worse. My son makes me get out in the evening and walk some baby steps he said.  I am like you I have shut myself off because of fear of having an attack.  Not so much vertigo just being off balance and dizzy is enough to keep me in. I am one of Amazons favorite customers  LOL  If you are on face book friend me I would love to keep in touch.  Jonese Azevedo  facebook name  Take care you are in my prayers and please keep me in yours.
    • daniel_43572
      daniel_43572 jonese98459

      Posted

      I might have to try xanax just when it comes to stuff like that the side effects scare me to death. If I could get past the anxiety and the feeling like I'm gonna pass out when I try to do stuff that would be great. I will also keep you in my prayers. 

    • jonese98459
      jonese98459 daniel_43572

      Posted

      Just to let you know I beat the anxiety the last time without meds.  I read a book by Clair Weeks on anxiety and it got me through it.  Look it up on amazon and buy it.  Also I have learned which is the hardest thing to do is not to run from it.   I had to force myself to go out it was horrible and so scary but the more I forced myself the more I was able to do it and the anxiety got better.   You will not pass out I never did but yes I was horribly dizzy with the meaniers. The .25 dose is just a therapeutic dose I am not one for meds at all. But you might want to try to see if it will help calm you  down to get your self out a little more.  It is easy for me to say these things but to do them is something else.  Believe me I am in the same boat right now I am terrified to go out and do anything.  I just keep reminding myself I have done this before I can do it again.  Have you done any therapy?  They are sending me for some vestublar therapy which I am scared to go to that as well.  I start next week.  Keep me posted and please try to get out of the house as much as you can.  Sincerely
    • daniel_43572
      daniel_43572

      Posted

      I did go to therapy and it really helped a lot it got me out and going more but change in insurance I had to stop going. But yes please go if you can it helps a lot 
  • tanney
    tanney jonese98459

    Posted

    you did not reply regarding which meds/treatment your ENT has you on for MD....
    • jonese98459
      jonese98459 tanney

      Posted

      He really does not want me to take diuretic because of something to do with calicum.  I have been taking mesclzine and that is about it.  Watching my salt and take xanax at night to help sleep.
    • jonese98459
      jonese98459 tanney

      Posted

      They really have me on nothing other than meclizine and told me to watch my salt intake.  I am going for counseling and vestibular therapy next week.
  • JMJ
    JMJ jonese98459

    Posted

    Dear Jonese,

    I'm so sorry that you're having such a difficult time.  I can understand your having problems with anxiety.  It seems to be part of the whole MD experience — you never know when it's going to strike or how bad it's going to be.   Why wouldn't you feel anxious?  

    After my worst bout with vertigo, I was unable to walk for a few days.  My doctor ordered Vestibular Rehab and Balance Training with a Physical Therapist, and it really helped a lot.  It was very difficult at first, but eventually I became a lot stronger and my dizziness was reduced quite a bit.  Perhaps you might ask your doctor about it?  It might make you feel less vulnerable and so, less anxious.  

    The treatment that works for me is intratympanic steroid injections...It wasn't a quick fix, but after a few months of treatments, it was like night and day.  My vertigo and dizziness were drastically reduced, and so was my anxiety as I began to have more and more symptom-free days.  

    Yes, we're all different.  I'm one of the people who get violent vertigo with vomiting. But still, feeling dizzy and off balance all the time is pretty horrible.  Did your doctor make any recommendations or discuss treatement options with you?

    I hope you find something soon that will help with your symptoms!  Wishing you the best of luck!

    Take good care,

    J-

    • jonese98459
      jonese98459 JMJ

      Posted

      I do not know what the doctors are going to do.  The ENT said no diuretics and just said watch salt. He said I should get better in three months????   I start Vestibular therapy next week as well as counseling.  During all this dizzyness I had an MRI with contrast and had an incidental find of a benign mennegenoma brain tumor which really threw me into more anxiety.  The neuro doctor swears it is too small to be causing symptoms but is sending me for a ANI to make sure the inner ear is clear of tumors.  I do not know why the MRI with contrast did not show that but then who am I to question.  I use meclizine and it is ok at night only for me.  I use Xanax to sleep has helped some but wake up two or three times with heart pounding. I did take an ambein one night to sleep and I slept through the night I think I am going to start that again.  I dont think doctors know much about this horrible disease.  Today was a bad day I had fullness in my ears and pain and that is when I am the most off balance when the ears hurt or are full.  If you know of any thing that will help as far as eating or anything I would love to hear.  Oh I take B vitamins, and I take magnisiam every night.  It is called calm and I do think that helps. Sorry about the spelling on some of the words.  
    • JMJ
      JMJ jonese98459

      Posted

      Dear jonese,

      I'm so happy that you're going to be starting vestibular retraining and getting counseling.  Both of those should help in a big way!

      As far as your doctor telling you that you'll get better in 3 months?  That is very, very strange.  MD typically doesn't get better in x number of months.  It's a progressive disease that ebbs and flows - Without treatment, some people do get months or even years off from symptoms, but most people will battle some cluster of symptoms unless they get some kind of effective treatment. 

      I wish I had more to offer you, but I can only personally testify to the effectiveness of the steroid injections.  My rescue meds include Meclizine and Glycopyrrolate, which have worked very well over time.  

      I am currently trying a whole food plant based diet.  It's supposed to reduce the inflammation in the body.  It's way too soon to tell if it's had any effect on my MD, but I'll certainly post about it when I feel that a decent amount of time has lapsed.

      I've taken Calm before as well, and I find it to be very soothing, especiallly when taken at night.  Also, I've found Sleepy Time Tea from Celestial Seasonings to be very calming and helpful before sleep.

      I hope you'll keep us posted about what's happening.  I'm glad you've shared about your anxiety...I think you'll see that most of us have been plagued by it at one time or another.  It seems to come with the MD territory!  But that doesn't make it any easier to deal with!

      Take good care of yourself!  Again, I'm so sorry youre having such a tough time right now.  Things will hopefully look much better once you've started treatment.

      J-

       

    • jonese98459
      jonese98459 JMJ

      Posted

      Thank you for taking the time to answer. I will post if therapy and counseling helps . I am just trying to stay calm and it is very difficult as everyone knows that goes through this. I am also starting a journal for triggers. Take care and thanks again
    • yolanda29073
      yolanda29073 jonese98459

      Posted

      Hi Jonese 

      am really sorry to hear about your anxiety, I have been feeling the same, just scared of leaving the house or even going to work. My job is not too far from home, about 10-15 min on public transport, but it feels more like an hour when you feel like you're going to either vomit or pass out. Shopping needs to be rushed and reduced to 30 min or less because the moment I feel something I just want to run home. This disease although not life treatening it is life changing and eventually most if not all sufferers will have anxiety and/or depression. I feel like this regularly, but I don't want any medication for it, I would rather just talk to someone about it and open up about, thankfully I have some family members and friends that although they don't completely understand they still listen and make an effort to support me. One thing that a friend said to me when I was at my lowest was 'to grab onto the walls when you can't see the light at the end of the tunel, and get yourself out'. What she was saying was fight like hell even when you don't feel like it, you will get breakthrough days and some less than good days and some horrible days, but you will make it.

      i really do hope we're all strong enough to fight to have our lives back.

    • jonese98459
      jonese98459 yolanda29073

      Posted

      Thank you I had a bad day today the wind was blowing so hard I felt dizzy and nauseous all day. I just am so tired of this anxiety as well. I made it through a therapy session and a counseling appt the thing is the counselor did not know what meaniers is?? I educated him about it. I am with you on meds I got through the last time without them so God willing I can do it again. I stopped the xanax for fear of needing higher doses to help me. I really have a good family that cares. They don't understand as many would not unless they get the symptoms but they are here for me. I am so thankful for this forum. You don't know how much what you said helped me today as I feel like I am the only one suffering most of the time. God bless

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