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Had Menieres for over 50 years .Really had enough.

Posted , 7 users are following.

rita_joann20397
rita_joann20397

started when I was twenty seven am now approaching eighty four.had hearing and half my balance removed many years ago and despite managing my condition last year Menieres is attacking my one good ear. Thus morning I have very little balance very little hearing and Tinnitus is almost unbearable.Tbh I just want to die. Not feeling sorry for myself but just had enough. Thus illness is not known about so I have been judged as difficult to get to know. Not true! I have struggled. I have tried. I have longed to be accepted. But I look well, I act well but inside I have been sufferings. I have just had enough!

0 likes, 23 replies

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  • miranda72220
    miranda72220 rita_joann20397

    Posted

    Hi Rita,

    I am so sorry youha e been suffering for so long and bad to undergo the surgery! I am 26 now and was diagnised last year but i have been seeing a chiropractor that specializes in atlas injuries (the top of the spine) and it has helped immensely ive had no vertigo barely any balance issues and although i wtill have tinnitus it is bearable. Please dont give up!!

    • rita_joann20397
      rita_joann20397 miranda72220

      Posted

      Thank you. I have seen so many consultants had so many ops they just look at me as a hopeless case. Very kind but not encouraging. Thank you again hope all goes well for you.
    • jackie72283
      jackie72283 miranda72220

      Posted

      Me too! I went to a physiotherapist May 2016 and have had no vertigo since then. Still have tinnitus, but can live with that.
  • fil39169
    fil39169 rita_joann20397

    Posted

    Hello Rita, I'm so sorry for you.  I know what it's like to feel like you'll never overcome the disease.  I was having attacks nearly every day and it was soul destroying and I felt I couldn't go out at all.  But just lately my husband stumbled upon a trial going on in Australia using viagra (of all things) to combat MD.  So we bought some on line (I was desperate) and tried it out and persuaded my GP (who had to go away and read the research articles) to prescribe it to me.  I've been taking it about a month now and it has turned my life around.  I can still feel when I might have had a bad attack but it enables my medications (stemetil) to work and I no longer need it via and injection.  From nearly every day I've gone down over night to two in a month and both of those were minimal and overcome by oral meds in minutes rather than hours.

    Ask your GP if you can try out viagra too.  I take 25mg before I go to sleep (it can give you a stuffy nose and a headache) and sleep through the effects.  Then in the morning I take 2 x stemetil as a preventitive and I'm sorted.  From rattling like anything with all the pills I was taking I'm down to just those three in a day.  It's nothing short of a  miracle and I want to share it with everyone on here.  I did post it but only got one reply.  I know not all meds work for everyone but really, viagra is brilliant.

    Get your GP to look at the Australian research and then prescribe it to you.  And let me know if it works for you.  It's got to be worth a try.  Best of luck.

    • rita_joann20397
      rita_joann20397 fil39169

      Posted

      thank you and apologies for taking so long. Sadly my GP hardly looks at me so wouldn't have much hope he woukd consider 'research'. We just don't get along. My dentist is more helpful. It did help getting it off my chest this afternoon. Tinnitus was filling my head and had distorted hearing screaming inside. Really bad day. Wish you continued improvement.

       

    • fil39169
      fil39169 rita_joann20397

      Posted

      Hi Rita, the obvious answer to the above is CHANGE your doctor!  You don't have to put up with a bad one.  You can choose whichever one you like so go for a more sympathetic one and make sure you let your old one know why you have changed.  On my surgery website there are customer questionnaires which allow you to give feedback so there ought to be on yours too.  Don't take your doctor's indifference lying down.  Do something about it.  It's your right to have a doctor who listens to you.  

    • rita_joann20397
      rita_joann20397 fil39169

      Posted

      i'm not sure if I've replied to you. Not done this Forum thingy before. So...

      changing my doctor doesn't really do anything. I see different consultants each time.Once they have seems history and spoken to me same answer.All that can be done has been done. All very kind but just have to deal with it. My outburst yesterday was when I had had a spate of attacks. Really bad tinnitus, pressure building and lost clarification with my hearing. My balance through first op being unsuccessful has never returned so am a walker. I just exploded with frustration crying and totally exhausted. I just emptied out and it helped. So thank you. Menieres is nit understood by the general public and difficult for those close. My typing us going a bit mad so will close but thank you so much fir lustenung

       

  • tanney
    tanney rita_joann20397

    Posted

    Oh Rita....I'm so sorry to hear about the struggles behind your story.  Bilateral MD is overwhelming.  May I make a few suggestions based on my experience of having MD in my left ear for 40 years and last August having it newly diagnosed in my right ear?  Like you I have bilateral MD.  Please do not give up...there is hope for bilateral MD sufferers.  Here is what I would like to suggest to you....

    1.  If you haven't already done so, please see your ENT as soon as possible.  If you recently have seen ENT what course of action was recommended?

    2.  Take your rescue meds such as Ativan 0.5mg as needed up to 3 times/day to calm the "bad" signals going to your brain that causes vertigo and other MD symtoms.  In addition this will calm you down and you can better plan the next steps....

    3. Make sure you completely eliminate caffeine (coffee, chocolate) from your diet.  Reduce salt to no more than 1000 mg/day.  Eliminate alcohol entirely.  These are basic MD diet requirements....I'm sure you know that but sometimes we "forget".

    4.  Do you take a diuretic (water pill)?  If so what is the dose?  This is important?  It's very possible that you need to increase the dosage.  Discuss this with your ENT as soon as possible.

    5.  Do you have allergies and/or non-allergic rhinitus?  If so this could be the cause of your recent bilateral MD diagnosis....it was for me!  If so you need to be on a good nasal antihistaimine SPRAY...NOT oral antihistamine!!  You also should consider a nasal flush once or twice per day.

    Please try doing above and then let us know how you are doing.  We do care and I know you can manage this....bless you!

    • rita_joann20397
      rita_joann20397 tanney

      Posted

      thank you so much and apologies taking so long in replying. The only medication I have is Betahistine (Serc). Today was just such a bad day and it helped to just say how it was. Not bothering anyone just letting it all out. Stupid of me really. Told time and time again nothing can be done.Had all the ops none of which have been successful Altho the vomiting was stopped.I think it was just a relief to have responses such as yours knowing I'm not alone. Each and everyone if my replies have been understanding and caring so thank you for that. 

    • tanney
      tanney rita_joann20397

      Posted

      You have received some good advice and interesting methods of relieveing your symptoms on this forum.  I hope you try them.  If they do not work for you I would suggest you try a diuretic since you are only taking betahistine (serc).  Ask one of your doctors to prescripe a diuretic such as dyazide (at least 25mg).  If you do go on it your will need to take your blood pressure weekly to be sure it has not dropped too low.  Also you will need to have blood work done twice/year to check kidney function/postassium level.  The diuretic should help with the tinnitus and balance problems you have because it pulls fluid from the inner ear which is the cause of your symptoms.  If 25mg proves not effective you can go up to 75mg/day.  The more you take, though, the more important it is to check BP and kidney function/potassium level. 

      Good luck.

    • rita_joann20397
      rita_joann20397 tanney

      Posted

      hi Tanney My only medication is Betaustibe 16 mg 3 times a day. I promise you I gave so many ENT consultants but none can help. I have had all the ops they can do but I just get these days like yesterday when it all gets too much.I feel my head will explode with pressure tinnitus lack of hearing etc. So as I have told the other kind people I just cry and want to scream and let it all out. You have helped me no end as I have been talking to people who really understand and now what I mean. So thank you. I am on a walker so I try to just do 30 minutes round the village each day.sadly my attacks are becoming more frequent so thus week I gave only managed three. I'm just so tired of it all. Nun nite

  • Questor
    Questor rita_joann20397

    Posted

    Wow do not blame you for being really discouraged. Have you ever seen a Upper cervical chiropractor for care of have you used SERC over this 50 years? SERC can be bought from a Canadian pharmacy for pennies a day. May I ask did you have an accident iin your younger years that altered you head and neck?
    • rita_joann20397
      rita_joann20397 Questor

      Posted

      I did fall on my head and lost consciousness whilst ice skating but when I came round I was given tea and took the bus home. No after effects.
  • Questor
    Questor rita_joann20397

    Posted

    Well you did have after affects its called Meniers!! It just took a long time to manifest, mine took over thirty years! Try to find an Upper cervicall chiropractor online or get in touch with Dr Burcon, on Facebook.
    • rita_joann20397
      rita_joann20397 Questor

      Posted

      Perhaps. I think you are in the USA I am in GB. I have noted your suggestions for which I am very grateful.I do feel a lot better today as I got a lot of negative feelings out if my mind yesterday. I did a lot of crying and telling it how it was with me. Sadly these 'bad' days are becoming more frequent. I had had three 'attacks ' in a row which totally drain me. Anyhow once again I thank you for your time and kindness.

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