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My Meniere's story...with a happy ending:)

Discussion in 'Your Living Room' started by runnergirl, Mar 5, 2021.

  1. runnergirl

    runnergirl New Member

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    Hi! I am new to this forum but not to Meniere's. When I went through a terrifying year of repeated severe vertigo attacks, I found this forum and it provided comfort to know that I wasn't alone and gave me hope. And now I want to do the same for others and let them know that I got through to the other side and came out stronger than ever:)

    My history briefly.... I am 60 now and was diagnosed in my early 20's; my mother also had Meniere's. For decades, my issues have always been more hearing-related. I am deaf in my right ear and got a life-changing cochlear implant 3 years ago; I wear a hearing aid in my left ear for severe loss. Vertigo attacks were sporadic, maybe 1-2 a year, and they didn't slow me down for long. I have always lived a very healthy and active life.

    The real nightmare began in May of 2019 when I had a sudden drop attack followed over the next year by repeated full-on rotational vertigo attacks (more than 100 to be exact!) that often lasted for hours at a time. Ablative treatments were discussed (laby with a 2nd CI, gentamycin) but since I am bilateral and already have minimal balance function in my dead right ear, knocking out my left ear was risky so I trusted my gut and decided to see how things played out with less destructive treatments. I was fortunate I could take a more wait and see approach . My kids are grown up and independent, I was able to retire early to focus on my health and I have an amazingly supportive family (and dog!). I tried antivirals, some JOH, B5/6 and oral steroids (diuretics in the past), had allergy testing and ruled out vestibular migraine. Eventually high doses of Serc (32 mg 3x/day) and dexamethasone injections every 3 months seemed to provide the much needed relief. Or who knows? It might have just been the natural course of the disease. I also adhere to a low salt diet, avoid caffeine, chocolate and alcohol, practice mindfulness and am strict on sleep routines. I take daily Vitamin C, D and a multivitamin. I have not had an attack in 6 months and while I know things can change in a heartbeat and may require a different approach, I will cross that bridge if and when I need to. My year from hell certainly took its toll; I lost 30 lbs and became very deconditioned but the emotional toll was almost harder to deal with. As you many of you know, the PTSD from recurrent and unpredictable vertigo attacks can be crippling but with time, I am healing as the memories fade. I have always been very active physically (running, hiking, skiing, etc.) and I was diligent in doing whatever exercise I could during my bad year, and once the attacks and the 'swimmies' settled, I began to rebuild by walking farther and farther and eventually began running again. Last weekend, to the delight of my running family, I ran a sub 50 minute 10 km virtual time trial and have resumed training for a half marathon and hope to run another marathon one day. A year ago, I was bargaining with the powers that be to just let me walk to the mailbox with my dog! I am a big believer in silver linings; I definitely have a new appreciation for joyful moments and every day that I can get out of bed and put one foot in front of the other! I hope those of you suffering out there find some relief from this nasty beast very soon. Thank you for reading:)
     
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  2. Bulldogs

    Bulldogs Well-Known Member

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    God Bless!!! Thanks for sharing
     
  3. Rubygirl

    Rubygirl Member

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    Thank you for sharing your journey! It's always good to hear stories that give hope and encouragement... Wishing you continued health and happiness!
     
  4. SurferGirl

    SurferGirl Member

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    May you blessed for continued success.... it does take it's toll. It's always uplifting to know there may be a light at the end of this long tunnel.
     
  5. teesdale

    teesdale Active Member

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    Thanks for sharing and all the best in your future endeavors.
     
  6. No thanks

    No thanks Member

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    Glad to hear you’re doing better. Please tell me more about your experience with the cochlear implant. I have lost most of my hearing in my right ear. My Dr. said that I’m a candidate for an implant, but I haven’t taken the plunge. You mentioned that it was life-changing for you. Please explain.
     
  7. runnergirl

    runnergirl New Member

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    I am grateful for my CI every moment of every day. I coped well with right sided deafness for many years and at that time, CI's were not even an option for SSD. When my left ear started to deteriorate, I managed well with CROS hearing aids until that ear entered the severe loss zone and became very distorted. I struggled socially and professionally. I felt depressed and starting avoiding stressful situations. That's when I knew it was time for a CI. Even though my implanted ear had already been totally deaf for 35 years, I had amazing results and could hear immediately at hook up and things just progressed from there. It truly was a miracle! The quality of my hearing improved dramatically. While hearing in large group and noisy settings is much less of a challenge, the most noticeable difference is in one-on-one and small group situations where I am more engaged and relaxed and rely much less on lip reading. Overall, I am happier and less fatigued due to less effort being required to listen. and to no longer 'ignore' people on my deaf side and hear in stereo are added bonuses. I was able to continue working in my job which relied on hearing. The biggest benefit has probably been hearing on the phone by streaming my CI and HA together via Bluetooth. I also stream to the TV and use my mini mic. My CI masks the tinnitus in that ear big time. During my year of awful vertigo, my CI was a life saver literally. I totally relied on my hearing to communicate while my eyes were closed for hours during attacks and vision was blurry between attacks. One of the biggest reassurances from getting a CI was eliminating that constant fear that one day, I was going to be totally deaf as my only working ear worsened. Instead my hearing will further improve when I eventually get a second CI! Hope this helps:)
     
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  8. No thanks

    No thanks Member

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    Thanks for sharing your experience with this. It is something I’m considering, but not sure I’m ready to pull the trigger yet. My left ear is still very good and I rely on it completely.
     
  9. Bryan Goins

    Bryan Goins New Member

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    ill have to keep track of your success. I have bilateral Menieres ( three years back) and i have now lost most of my hearing in my better ear....and at the same time, can hear words more clear in the bad ear. Without hearing aids...I can not hear more than 3-5%. The CI will be next...just want to wait until i get worse. I hear a LOT of noice...birds drive me crazy.
     
  10. jose suarez

    jose suarez Member

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    Love your story, it bring peace to my mind. Thanks
     
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  11. Justme77

    Justme77 New Member

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    This is so great to hear!! Good luck in the future!
     
  12. Brownezes

    Brownezes New Member

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    Jun 7, 2021
    Hi I'm Brownezes and new to this disease. and this page. Been surfing and it seems mostly up beat. Looking forward to sharing and learning what the possibility of relief from the horrible disease.
     
  13. Cheryl

    Cheryl Active Member

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    Welcome to the forum Brownezes, but sorry you have the need to be here. Read and ask questions. I think you will learn a lot.
     
  14. Paul101

    Paul101 Member

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    Will getting a second cl implant make u have balance problems
     
  15. EAOfficial

    EAOfficial Member

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    How do you balance with such a degraded ear/vestibule? I had my 3rd attack and it's been like 3 weeks and I still feel really dizzy as I move around. Do you drive?
     
  16. Hi new to posting in the forum and nervous to do so. Here goes I have had this dreadful disease for 12 years. I was wondering if anyone has noticed an increase in the number of attacks since having the Covid vaccine? I am currently going through a 3 month session of menieres at the moment with today being a kinda full feeling in the head day (which I am thankful that is all it is and hope it doesn't go back to spinning and vomiting) Just curious as the disease seem to be burning itself out until I received the shot .. now all sorts of things have been going on
     
  17. EAOfficial

    EAOfficial Member

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    Yeah, so it turns out that the covid vaccines are in general in some people bringing a resurgence of herpes-family viruses.

    Shingles, bels palsy, vestibular neuritis, meniere's - all caused by herpesviridae winning for a little while before the immune system ramps up and fights back

    Incidentally, it turns out that the antivirals described by Gacek et al. also work for Bels palsy. Same etiology
     
  18. I believe this for sure. Certainly has been an uprise in the number of shingle cases, me included. I had shingles last February .. still can feel where the blisters were. My case involved my shoulder arm and the blisters appeared on my thumb and palm.
     

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