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Had enough :(

Posted , 6 users are following.

jacqueline49907
jacqueline49907

hi really struggled with MD, fibromyalgia for 2 years. Had grommit put in, steroid injections, gentamicin injections then endolymphatic sac decompression before Xmas. The atacks of MD have subsided a little but still having atacks,don't  have a 'normal' life. Can't drive, lost my job but most of all lost my independence. I am feeling lost I don't know what to do to get my life back, so scared it's starting in my other ear. Any advice would be greatly appreciated. I can't get people to understand how MD changes people's lives. 

0 likes, 7 replies

7 Replies

  • angela79369
    angela79369 jacqueline49907

    Posted

    That sounds bad. I can relate, as I also had a grommet + steroid injection. My betahistine dosage is 32mg x 3 times a day plus a blood pressure pill (water tablet) I have been good for 16 months since the grommet and am driving and working. However, lifestyle had to change, I need quiet calm environments, limited alcohol and not be subjected to noisy places and people. Are you on a drug regime? Can the dosage be increased? I feel for you, your story could be many of us so I hope you can get better. I had 35 attacks pre-grommet, stopped driving for months, kept office job but had to sit/lay in quiet room on many occasions. People don't understand.." she's having one of her dizzy spells " doesn't really cover what we go through... but, we must remember it is not life threatening and so many people have worse things than us. Tho, mid attack, that doesn't help eh.. sending you warm wishes I hope you improve.
  • jacqueline49907
    jacqueline49907

    Posted

    Thank you Angela, I also take 24mg of betahistine 3x a day and sturgeon 2x15 mg tablets 3x a day when I need it. I also take BP tablets,amitriptyline and other prescribed meds. It seems never ending, I think I may have pinned everything on each procedure working,then been so disappointed when it didn't. I too feel a lot worse when stressed or in busy loud environments. Am now hoping it is just going to take time to settle. My family seem to think I have selective hearing but my hearing fluctuates. There is many a person in a lot worse situation. I am lucky I don't have anything so bad. Hope you keep getting better, keep smiling. 
    • Aj1970
      Aj1970 jacqueline49907

      Posted

      I've never had any procedures they stuck me on Valium 3 years ago at 20mg throughout the day and now I'm on bp meds. I have nodules throughout my body and anxiety and panic attacks. Had a small 5 second attack at home yesterday while talking on the phone with the ear it affects. I have it pretty bad I used to drive a school bus for 20 years on disability for past 3 years. I have 3 kids two are step children and they tend to argue and disagree with me a lot and that doesn't help, almost deaf in my right ear. I also developed night time blindness and I walk off balance all the time running into walls, etc. The Valium has helped a lot still can't drive in the rain or snow can't take a shower with my eyes open or sleep on my right side. I pray all the time my Ent said maybe one day it would burn out. Gave me the option for surgery with no guarantee it wouldn't move to my other ear and I would loose all balance on that side and could take a long time for my other side to compensate for the loss of balance but if it did move to the other side I would wheel chair bound. So I choose Valium. I also have a pineal cyst on my brain. Stress is a big factor and having a 16 year old girl and 2 12 year old boys is a lot of stress.
  • jacqueline49907
    jacqueline49907

    Posted

    It's good to hear someone who has the same problems as myself such as balance and not doing so well in the dark. I also can't sleep on the affected side. My own gp has said he has limited knowledge of the condition so he isn't much help.I feel for you and really hoping you get some relief from this little understood condition. 
    • jennifer343434
      jennifer343434 jacqueline49907

      Posted

      Your situation sounds a lot like mine right now.  I was diagnosed in 2011 and only had one or two big attacks of vertigo a year for a couple years. This past two years I have been having cluster attcks with smaller ones almost every day, sometimes twice a day.  I'm considering a Meniett device. On water pill and anti-depressant daily and have meclizine and valium when needed which i try to avoid but have not been able to lately.  Loudness, stress, sodium intake, head movements, and just like you laying on affected side, etc triggers it.  often wake in the middle of the night with it.  i'm completely at my wits end. I understand what youre going thru...
  • ludka
    ludka jacqueline49907

    Posted

       

    I think it weather. Days too short, so when we are driving home it is too dark. 

    I am trying to keep up, but it is too hard. Do not care what people thinking. Closing door in office, listening to music. Yesterday it started again after a month of "normal life" .. I told my boss that when my head jumping out I have problem. .. Honestly, I will not give up. People, who do not understand, it they are problems, not ours. I will never be "normal" again, so what ?Show me one normal person around, please...

    • jacqueline49907
      jacqueline49907 ludka

      Posted

      After yesterday's hospital appointment then reading your comment made me realise I am what I am, I will have to just to take it as it comes. If people/family don't want to try to understand it's there problem. Take care
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