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How do you know if the gentamicin has worked?

Discussion in 'Your Living Room' started by AnneT, May 16, 2019.

  1. redwing1951

    redwing1951 Well-Known Member

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    I also thought I would never adjust to stores. It took a long time but eventually my brain adjusted and I now have no issues. Everything you describe is so familiar!! You are doing great!

    We have an RV and Michagan, Wisconsin and Minnesota are on our bucket list.:)
     
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  2. Clare

    Clare Active Member

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    It won't be forever, just for a few weeks, maybe. The brain gets overwhelmed by visual stimulation and is getting mixed messages from the newly damaged vestibular system. As the brain learns to accommodate, the nausea and dizziness go away, and Target will once again bring you unlimited joy.
     
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  3. Saera

    Saera Active Member

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    Target is such my happy place too! Fishing has helped a great deal. Walking and moving and looking at wavy water. I feel like after almost 21 days of daily drops my vestibular system has to be pretty close to done for .... I mean seems like a lot of treatment but so hard to find data on people using this protocol exactly. So who knows.
     
  4. Saera

    Saera Active Member

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    Yes!!! Would love to meet you!!
     
  5. AnneT

    AnneT Active Member

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    Saera
    Re: lack of data on your drops protocol. I guess you could look at the low dose outcomes, especially Dr. hains’ info, since you had the 40 mg shot to start. You just had bonus!

    And even with studies saying eg 80-93% success... I don’t know if I’ll be in the 93 or the 7. You know?

    It’s a drag that only time will tell. But I’m glad we have these treatments available, and are in the system getting it done!!
     
  6. Saera

    Saera Active Member

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    Today I have done a lot of moving around. Driving and fishing. And I’m feeling it. Sort of like a nystagmus feeling but just dizzy. Not vertigo. Just maybe overdid it.

    Guess I’m resting for the rest of night.
     
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  7. AnneT

    AnneT Active Member

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    Day 15. I spent nearly 4 hours chatting with a few friends, catching up and enjoying lunch together. I drove both ways. I had a couple of zaps of tilt feelings - sitting, head turned left. And whoozy off balance feeling if I stood for a few minutes.

    Just had a meditation and nap. Will also take it easy for the rest of the day! Maybe a short walk and get doing my vestibular exercises again.
     
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  8. Saera

    Saera Active Member

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    I went out fishing again. Lol. Fiancé annoyed me so I needed alone time. I am so tired. I think I’ll sleep well tonight.

    So glad you got out with friends. I miss that so much! And I can’t do noisy places yet. I can still hear sort of but for some reason it’s too hard now after the gentamicin.
     
  9. AnneT

    AnneT Active Member

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    Day 17 after second gentamicin.

    Moderately off balance yesterday. Have been neglecting my walks, yoga, Physiotherapy. Just not too motivated.

    Felt a bit of nystagmus and slow vertigo with eyes closed when I woke up. Had another 1-2 second mini vertigo while standing in the kitchen.

    Looking at my notes from the first gentamicin, today may be the bottoming out day. Hopefully things will start improving again now. And I’m hoping that these mini-vertigos are the gentamicin, not Menieres breaking through.
     
  10. AnneT

    AnneT Active Member

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    PS. I had Hubby (family doctor) look in my ear. The eardrum has a little redness and thickness to it, but the hole is healed up.

    Yesterday morning it gave me a brief zap of sound and pain, like when the doctor put the freezing on it. So, not sure what that was about.
     
  11. Saera

    Saera Active Member

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    It’s the GENTAMICIN!

    That’s what we’re going with. I’m all done with drops now. Finished last night. Now we wait to see dr. Huang next week and see if we do surgery or not.

    No vertigo here. Couple panicky moments but mostly just off feeling still. Turning head is hard and looking down and stores. Otherwise I’m improved quite a bit.

    But I’ve had weeks with no vertigo before. So how do I feel confident this worked and alleviate the anxiety I have leaving my home?

    That has yet to be determined. Sigh
     
  12. AnneT

    AnneT Active Member

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    We are definitely on the same page, Saera! Your post sounds like the inside of my head. Even our doctors... Hwang and Huang! For real?

    The timing of vertigo attack free does sound hoped, for both of us, that it’s working. Maybe doing your shot + drops = 2 low dose shots. So maybe you also have 93% chance of it working.

    I did a bit of my vestibular rehab yesterday. As Onedayatatime says, it’s time to get serious.

    Kind of queasy/headache on a 25 minute walk last night. Took a nibble of Ativan before bed. Now I just feel hungover! And wobbly, eyes not keeping up with my head movement if I go too fast.

    More family stress to deal with. Will try to take it easy.
     
  13. Saera

    Saera Active Member

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    Big hugs about the family stress.

    I have not done any exercises per se. Just keeping myself busy. Harder some days than others.

    Hoping the find some answers next week.
     
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  14. AnneT

    AnneT Active Member

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    3 weeks since Gentamicin shot #2.

    Exhausted. Trying to rest, but I get a little of the counterclockwise movement and nystagmus with my eyes closed.

    It’s such a long tedious road - sometimes I forget that I’m still in the Gent Zone!! - but I must be getting close to the turnaround point again! So I’m cheering myself on. Balancing act between keep moving, and take it easy.

    And remind myself that:
    1. It was waaaaaay shittier at the 3 week mark first time around and
    2. The fact that I’m feeling it means it’s working and hopefully I’ll keep being attack free.
     
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  15. Saera

    Saera Active Member

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    Yes! You will turn the corner soon! And hopefully this will be the end of it for you! For good!
    I see my Dr. Huang today to see what’s next. Nervous as a mother.....
     
  16. AnneT

    AnneT Active Member

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    Day 23. Momentary double vision when I woke up. A bit hunched over, feeling for walls sometimes as I walk around the house. Hopefully I’ll be ok to drive the short distance for a very overdue lab appointment.

    Saera
    Hugs! Praying for wisdom for you and your doctor, and your fiancé! And peace with whatever your decision is today.
     
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  17. AnneT

    AnneT Active Member

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    3 1/2 weeks.

    The morning double vision is gone. Wobbly walking, but I’m doing vestibular exercises. No cane. Practiced music with the team last night - tolerating the sound (in ear sound system).
     
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  18. Clare

    Clare Active Member

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    Nice progress! Look for more milestones each week. You're off to a solid start, and it only gets better.
     
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  19. Saera

    Saera Active Member

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    Glad you had a good day Anne!!
     
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  20. Onedayatatime

    Onedayatatime Active Member

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    Very Nice Progress! :):)
     
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