/ Register

  1. Get our daily digest email where we email the latest new topics from our Strictly Health forum to keep up with the latest developments! Click here to subscribe.

Low dose gentamicin

Discussion in 'Your Living Room' started by PleaseNoDizzy, Dec 23, 2017.

  1. Dec 23, 2017 #1
    PleaseNoDizzy

    PleaseNoDizzy Active Member

    243
    29
    28
    May 12, 2014
    I’ve read old threads from the archives but looking for updates. If you received a single (or a couple separated by a month) of low dose gent shots, can you update how you are now?

    I’m sadly in a place where something has to change. What I’m going through isn’t sustainable. I’ve had Ménière’s for 6.5 years, with a half dozen vertigo attacks spread mostly in the first 1-2 years. For 4+ years things have been mostly under control - no vertigo - thanks to diuretics, lo so diet, and betahistine (early on I did try AV and JOH, neither helped). I have still dealt with all the other symptoms, mainly moderate hearing loss and bad aurul fullness and tinnitus - but I could still function as a human absent of vertigo. Things were also looking more MAV like than MM (my oto thinks I have dual diagnosis).

    About 6 weeks ago he advised me to start gradually stepping down on my high dose diuretic, since things going ok and for the sake of my kidneys which have unrelated but stable issues. I only went down by 25% of the dose. Might still be coincidence but 3 weeks later my usual symptoms really ramped up. After three weeks of that, vertigo also returned . In the past 7 days I’ve had a onehour violent spin attack, followed by one hour “recovery” where spinning has ceased but I still can’t move head... then I’m just plain wore out. This has happened EVERY 12 hours for a week now. I can’t drive. I can’t work. I can’t take care of my kids. It’s unsustainsble.

    Steroid shot last week plus a 6-day oral steroid has done nothing.

    Looking at next steps and reading mixed things on internet about the low dose gent.
     
  2. Dec 23, 2017 #2
    Mac

    Mac Active Member

    353
    58
    28
    Oct 23, 2017
    I have honestly tried everything under the sun except gentamicin...literally everything. So I can't help you there.

    Since your vertigo is so active it sounds like a good time to try it... I have lost most of my hearing in my right ear from MM and I can tell you (in my opinion) that balance is more important than hearing. My main issue now is chronic disequilibrium. I too have young children and am getting closer and closer to a labby.

    Hopefully someone on here has more feedback than that...but if I were you I would try it.
     
  3. Dec 24, 2017 #3
    Pupper

    Pupper Active Member

    999
    74
    28
    Oct 15, 2016
    I had six gent injects. Over about 7 months. Did not change my everyday dizzy. Maybe helped with my major spinning attacks.

    There's a great thread from a guy who was "cured" with them. If you can't find it let me know, I have the link somewhere.

    I think it was Dr. Hain who said gents don't work in the first 1 or 2 injections, more probably won't work. Or you should tell doctor to switch his gent supplier. (So typical of MM, nothing is simple!)
     
    • Informative Informative x 1
  4. Dec 26, 2017 #4
    redwing1951

    redwing1951 Well-Known Member

    1,477
    193
    63
    May 13, 2014
    New Hampshire/Florida
    My OTO, Dr. Rauch from Mass Eye and Ear, also told me if 2 gent shots don't work than most likely they are not going to. After my first shot I said no more. I was continuously dizzy for 8 months. I went vertigo free for those 8 months but felt like crap every day. I chose to end my misery.
     
    • Informative Informative x 1
  5. Dec 27, 2017 #5
    Pupper

    Pupper Active Member

    999
    74
    28
    Oct 15, 2016
    Agree. Yes. I left out the "IF" in my first post quoting Dr. Hain.
     
  6. Dec 27, 2017 #6
    Autumninthefall

    Autumninthefall Guest

    I have NOT had gentamicin injections because a relative in the medical profession made me promise to never go that route. Apparently, gentamicin is known to be highly toxic. As an aside, I do know that the Shea Clinic in Memphis offers an alternative to gentamicin injections, streptomycin injections. There is supposed to be a lower incidence of hearing loss when using these injections. I chose not to go this route either after speaking with my ENT. He said I was more than welcome to give the Shea Clinic a try, and was very supportive of anything I chose, as he understood this was a difficult choice. He also advised me, however, that he’d previously had several patients go the streptomycin injection route, and they just didn’t work. Just a heads up, alternatives are available, but...
     
  7. Dec 27, 2017 #7
    PleaseNoDizzy

    PleaseNoDizzy Active Member

    243
    29
    28
    May 12, 2014
    Ok thanks for the input. With my oto’s encouragement it looks like I might go the shunt route soon... hoping against hope that the vertigo subsides on its own before I get to a surgery date. He wants to go as non invasive as possible before going the more destructive route, although recognizes shunt is hardly fail safe and even when it works in short term it likely won’t be a permanent solution.

    One interesting thing he said yesterday as e discussed gent, which I hadn’t heard/read before... he suspects that when gent fails it may be due to an inability of the med to permeate into the inner ear due to scar tissue from our years of MM. he can’t prove it, just something suspected for some. Would also explain why steroid injections do nothing for me. I’ve had scar tissue issues in the past elsewhere so it resonates.
     
  8. Dec 30, 2017 #8
    robbitl

    robbitl New Member

    22
    0
    1
    Mar 27, 2016
    Don't go the gentimicin route. I have had two injections. My doctor in Jacksonville said that I have suffered permanent disequilibrium from them. I have had to medically retire after 27 years from a job that i loved. If I had it to do over again, I would not do it. My philosophy, you get over a vertigo attack but you do not get over permanent balance issues.

    Terry
     
  9. Jan 16, 2019 #9
    AnneT

    AnneT Well-Known Member

    1,021
    205
    63
    May 14, 2014
    Alberta
    So for those of you with bad experience with gentamicin or streptomycin... did any of you go onto surgery? If so, how’s the dysequilibrium now?

    I just had a Hell year of vertigo and my dysequilibrium is worse. (Though both improving the last 3 -4 weeks since starting valtrex, joh, TheraSpecs and Daith piercing). I’ll be either seeing local Neurotology or doing phone consult with House Ear Clinic... so I’m arming myself with as much info as possible.

    Thanks!
     

Share This Page

Welcome to our site! Please take a moment and Register today!