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Thought I was done but Menieres disagreed

Discussion in 'Your Living Room' started by KaSchu, Oct 26, 2019.

  1. KaSchu

    KaSchu New Member

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    Meniere's and I are old acquaintances- I had my first vertigo attack 32 years ago at age 18, was officially diagnosed with Meniere's in my right ear at 23, and as of 3 days ago, I'm officially bilateral. Let's just saw this hasn't been my best week ever.

    My approach to Meniere's has always been acceptance - we all have struggles, and this just happened to be mine, and I was NOT going to let it stop me from living a full and productive life. And I haven't. Yes, it'd knocked me down a few times, but I dealt with it, got back up and moved on. I'm one of those annoying "glass is half full" people who can find the humor in almost anything, so I joke with friends about walking like a drunken sailor, blame every time I've forgotten something on my temperamental hearing (that works less well when people email you, but oh well) and just got on with things.

    This week, though, there aren't enough swear words available for me to properly convey how I'm feeling. I'm fully aware that life isn't fair - my teenagers have heard me say those words more times than they can count but -- THIS ISN'T FAIR! I put in my time. My doc said he thought my right ear was burning out. AND NOW MY FREAKING (and yes, I really do want to use a different word but I'll keep it clean) LEFT EAR DECIDES IT WANTS IN ON THE ACTION, TOO.

    To think I was done, and to have it come roaring back, worse and resistant to the steroids that have been my longtime saving grace, is a bit of a blow. I'm giving myself a week to wallow, so this is me wallowing and hoping to get some support from people who know what I'm going through. My husband & kids have been awesome, but if they grab another piece of food from my hands so that they can check the sodium content, you may be reading about us in the paper.

    Can I just say that Meniere's really sucks? I'll be back to my usually cheerful, annoyingly positive self next week, but for now, that's my new mantra. Meniere's sucks. And it's not fair.
     
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  2. Gardengal

    Gardengal Member

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    It does suck and it’s not fair. I am sorry you are going through this. Rumor has it that the second affected ear isn’t as bad as the first! Hopefully that will be your story!
     
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  3. Blakeh

    Blakeh Member

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    Thanks for sharing that. You have an amazing sense of humor about it, I admire that. And you are so right, Menieres does indeed, suck!

    Please stick around.
     
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  4. Mac

    Mac Active Member

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    I'm sure you've tried everything...but if you haven't tried antivirals I would give it a shot (full throttle)...nothing to lose. I was diagnosed 12 years ago at 28...I feel for you...hang in there!!
     
  5. California Sun

    California Sun Active Member

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    I hope this will be the case for KaSchu, but in my case, the second ear has been much, much more troublesome than the first ear has ever been.
     
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  6. KaSchu

    KaSchu New Member

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    It's funny, I have tried SO many different things but never antivirals. My current doc of the past 12 years or so - who is amazing and who specializes in Menieres - is convinced mine is autoimmune so we've only done diazepam, diuretics & steroids. I've always wondered though.

    And unfortunately, it seems like my left ear is a little $#@! and causing more problems than my right one did at the beginning. But, that was years ago when I was in my 20's and seemingly invincible, so who knows?

    Thanks for the support, guys. I needed it. :)
     
  7. Blakeh

    Blakeh Member

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    I would definitely give antivirals a shot, what’s the worst that could happen.
     
  8. Bonlyn

    Bonlyn Active Member

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    That is great you have had a doctor with a speciality in Menieres from the beginning. That really is a blessing.

    Just wondering how he determined yours is autoimmune, as opposed to what....virus, etc?

    Your positive outlook has probably helped you get this far and will help you face this next mm chapter.

    Hope you find something on the forum to help you get you through it too.

    Welcome and best you. Bonnie
     
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  9. Kevinb003

    Kevinb003 Member

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    Agree with the antiviral suggestions. I am bilateral myself, although the 2nd ear to go only has cochlear hydrops (so far). I believe antivirals have helped tremendously with the 2nd ear.
     
  10. Diane

    Diane New Member

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    Good Morning, new here to this forum. Really struggling with how meneres is affecting my life. I feel OUT OF SORTS EVERY DAY. Light headed and some mild dizziness EVERY DAY . It's been like this for 3 months. All information I've read says this comes and goes and is room spinning. Not that way for me . No room spinning just put of sorts, light dizziness and CONSTANT. When I lay down I feel much better. Dr. tells me no salt no sugar no caffeine?? Feel like I can't eat or drink any thing. Very depressed. Having to leave work early because of symptoms. Os there any light at the end of the tunnel??
     
  11. Blakeh

    Blakeh Member

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    Hi Diane,

    I felt just like you when I found this forum many years ago. There is DEFINITELY light at the end of the tunnel. Many people on this site including myself have lived symptom free after finding solutions on this site.

    There is plenty of valuable information on the site. Once you have been diagnosed with Menieres you should be able to get antivirals which is what has given myself relief.

    I would recommend first to get a docotors opinion as it could be something else.
     
  12. Megan Henry

    Megan Henry Member

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    Hi Diane,

    I have almost the exact same symptoms as you. My medical diagnosis is "hydrops". I feel for you so much! I get it, I too feel like I'm on a boat every day. Sometimes it feels like someone is pushing me. I'm blessed to not have vertigo attacks yet. Thank God. I just started about a week ago with the antivirals and it is helping some although it's snowing where I live and weather messes with me horribly. The thing that has helped me the most is exercise. I also noticed a direct correlation between sugar consumption flaring my symptoms. I eat very healthy and if I have even just a little sugar it has a huge impact on my ability to keep steady. I'm not going to fib, there are days where I get incredibly depressed because it seems like a losing battle. But I always know that there is hope and a light at the end of this tunnel and the same is true for all of us. There are more success stories on this forum and that says a lot. Don't listen to your doctors when they tell you there is no cure. That's simply not true. It's just such a foreign, multifactorial disease that doctors don't know how to treat us. You will find answers. Hang in there!
     
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  13. Marta

    Marta Member

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    KaSchu I am sorry to hear you have to go through this again. Don’t stop looking for THE answer to your problems. Perhaps antivirals can be one of them. Do not give up, you are a fighter!
    By the way I love your sense of humour. I giggled a few times reading your post even though it wasn’t a funny message at all.
     
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  14. Diane

    Diane New Member

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    Thanks so much for your input! Dr is telling me this is the diagnosis although my gut is telling me there is something more to it. I had several other tests ran that ruled out other medical conditions so I'm looking for a second opinion with another ENT.
     
  15. Diane

    Diane New Member

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    Thank you so much Megan! Feels good to talk to others who know what I'm going through
     
  16. Megan Henry

    Megan Henry Member

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    Also Diane, Ask your doctor about Betahistine (aka Serc.) Make sure you see a good neurotologist. I had great success with Betahistine for the CONSTANT unsteadiness and tinnitus but unfortunately had a bad allergic reaction so the Dr. told me to stop taking. Betahistine dulls your nervous system down and is by no means a cure, but may give you some much needed relief. It did for me until I had to stop taking. I might also inquire about direutics although in my opinion, they are helpful for a short time and caused more issues for me than they did good. There are lots of options!
     
  17. Megan Henry

    Megan Henry Member

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    Do you have hearing loss/tinnitus? Also have you figured out what triggers your symptoms to become more aggravated? For me it's sugar and weather. A drop of sugar will do me in.
     
  18. Megan Henry

    Megan Henry Member

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    Of course! I know exactly what you're going through. I'm 6 months into this and the thing I wish someone would have told me from the get go: do not waste your time with primary care doctors or ENTs for that matter. You need to go straight to a neurotologist. Research a good one, see what others patients have to say. I still have yet to find a qualified one. You really have to advocate for yourself as well. Do not be timid about what you need. It's your body, you know it the best. Ask for what you want and don't settle for anything less than being full recovery because there is a CAUSE and no it's no idiopathic or lifelong.
     
  19. Blakeh

    Blakeh Member

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    Aug 20, 2016
    Great, it sounds like you are taking action. I did not realize you already had a diagnosis of Menieres. That will make it much easier to get treatment.
     
  20. Irishstu

    Irishstu Member

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    Kevin003. When you say its only cochlear hydrops so far.....what do you mean by that? Do you mean tinnitus, aural fullness but no dizziness? Im trying to differentiate between CH and MM. thx
     

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