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 Gent

Discussion in 'Your Living Room' started by Mac, Nov 25, 2019.

  1. AnneT

    AnneT Active Member

    967
    185
    43
    May 14, 2014
    Alberta
    So glad for you, Mac/Brian! And good for you, doing your daily yoga and rehab. I struggle with routine, but I'm trying to keep building that habit, too. And walking.
     
  2. Mac

    Mac Active Member

    353
    57
    28
    Oct 23, 2017
    Anne,

    I still do the yoga and exercises everyday. I started two weeks after the procedure and I plan on doing it for the foreseeable future. I am also walking as much as possible. I try to get outside 7 days a week but sometimes I am forced to do the elliptical if the weather is crappy. But either way... I am hitting 10,000 steps.

    Hope you are feeling well.

    Mac
     
    • Like Like x 2
  3. Mac

    Mac Active Member

    353
    57
    28
    Oct 23, 2017
    It has been 6 months since my low dose gent shot. I am very happy I did it. It is not perfect. The first 6 weeks were hell but so far so good. My balance is getting better. It will never be anywhere near perfect... but I can deal with it. I am very active. Walk all the time.
    My hearing actually got slightly better. I was about 70-80 decibel hearing loss across all frequencies. I also had about 25-40 percent clarity. This was consistant for about 4 years. I now have about 50-60 decibel loss with about 80 percent clarity. I think there was a ton of fluid in there for years.

    In any case... I would not get low dose gent until you've tried everything. I had for over 12 years. I literally tried everything. If need to get another I will. If I need two more I will get that.

    I have had not had vertigo since the shot. I pray to God that continues.

    I wish all you good health and stay safe during these crazy times.

    All the best.

    Mac
     
    • Optimistic Optimistic x 1
  4. Cheryl

    Cheryl Active Member

    891
    77
    28
    May 23, 2014
    Mac, How does gent help with fluid in the inner ear? I thought gent was to end vertigo. I've never had gent, so I'm curious. I've had a VNS.
     
  5. redwing1951

    redwing1951 Well-Known Member

    1,431
    168
    63
    May 13, 2014
    New Hampshire/Florida
    Mac so happy for you. I know how much you have suffered. It's great to read that you are doing well.
     
    • Like Like x 1
  6. Mac

    Mac Active Member

    353
    57
    28
    Oct 23, 2017
    Cheryl - I have no idea why gentamicin would lower fluid in my ear. Truthfully I dont know if the doctors do either. It was only the 3rd time my doctor had ever done it. It was his first (20) low dose shot. He had previously done 40. Again...all of this could be temporary. I am 12 years in...I dont get my hopes up.

    Red wing - Thanks so much...Its been a hell of a road. Any sort of relief for any time period is a blessing.
    Thanks.

    Mac
     
  7. Cheryl

    Cheryl Active Member

    891
    77
    28
    May 23, 2014
    Thanks, Mac.
    I hope the relief you're experiencing lasts for years to come.
     
    • Like Like x 1
    • Fistbump/thanks Fistbump/thanks x 1
  8. beks

    beks New Member

    5
    1
    3
    May 4, 2020
    DFW Metroplex
    Mac - I'm new to the forum, but I wanted to thank you for sharing your gent journey. I finally did the shot in 2014 after more than 15 years of dealing with severe vertigo. I got to a point where attacks were escalating in severity and frequency, and my kids were being impacted more and more. Like you, I got to a line where I was just done with it. I already had severe-to-profound hearing loss in that ear, so additional loss was not a concern. My post-shot experience was similar to yours. Those first several weeks were really challenging, and it was tough to get through the nausea and dizziness. I am very happy to say, though, that after six years, I have not had any severe vertigo attacks. I still have Meniere's episodes with bilateral disease, but I just don't have to deal with the severe vertigo anymore. In hindsight, I don't know why I waited so long to do it. I should have done it as soon as the hearing loss wasn't a concern anymore, but I think we all have to get to that "i am just done" line. I am very thankful that gent was a treatment option. It sounds like you are doing great!
     
    • Fistbump/thanks Fistbump/thanks x 1
  9. Mac

    Mac Active Member

    353
    57
    28
    Oct 23, 2017
    It has been 1 year since my shot of Low Dose Gent. Reminder...I has spent years trying everything so this was my last move prior to getting a labby.

    Great
    I have not had vertigo since the shot.
    My hearing actually slightly improved.
    I no longer wear a hearing aid. I had everyday for 3 years prior.
    I have my life back.
    My kids have a Dad again.

    Bad
    The recovery was hell. Don't let anyone tell you otherwise.
    My balance is permanently messed up.
    The fact I am a healthy 41 year old helps. If I was 70 plus... I would imagine a lot of falling over.

    It took me 6-8 weeks before my brain started to figure out what the hell happened. I would do it again in a second. Life with Vertigo is not a life.

    If you are considering it... try the Low Dose approach. Many doctors start with .40 but you are better off with .20 (low dose)

    Hope everyone has a great Thanksgiving and a happy & healthier 2021.


    Mac
     
    • Fistbump/thanks Fistbump/thanks x 1
  10. redwing1951

    redwing1951 Well-Known Member

    1,431
    168
    63
    May 13, 2014
    New Hampshire/Florida
    Great news Mac. I know how you struggled with the beast. So happy you found success with the gent shot.
     
    • Like Like x 1
  11. Mindosa

    Mindosa Member

    342
    16
    18
    Jun 8, 2020
    Did you try endolymphatic sac decompression or endolymphatic duct blockage surgeries?
     
  12. Mac

    Mac Active Member

    353
    57
    28
    Oct 23, 2017
    Yes. In 2016. I was told 70% success rate. I fell into the 30% bucket of more hell.

    I have since read in many places that the shunt surgery has the same success rate as the placebo.

    Mindosa...When I tell you I tried everything... I tried everything. Trust me. When you have young kids you have no choice but to.

    I wish you all the best.

    Stay well.

    mac
     
  13. Mindosa

    Mindosa Member

    342
    16
    18
    Jun 8, 2020
    Which particular surgery did you try? I was recently researching about surgeries and found that endolymphatic duct blockage (ETD) surgery has the highest success rate comparing to others, about 96.5%
    Source:
    Endolymphatic duct blockage: a randomized controlled trial of a novel surgical technique for Ménière's disease treatment - PubMed

    I know you have tried a lot of things, even the orthokine / regenokine therapy and this says a lot. But to me particularly interesting is the story about SPI-1005 (also called Ebselen).
    You were writing that you were participating in the Sound Pharmaceuticals trial, twice I think, and you were writing that SPI-1005 was working for you.
    Have you tried to get this drug molecule for yourself after that trial? Or this drug molecule was working for you only in the short term like orthokine / regenokine therapy?
    Here I calculated the treatment cost with the SPI-1005 (also called Ebselen):
    Has anyone tried to get Ebselen (SPI-1005) online?

    I myself now reached a safe plateau, but with MD you newer know what's gonna happen tomorrow, so for me your Meniere's story and your experience is very interesting.
     
  14. Saera

    Saera Active Member

    167
    29
    28
    Jul 5, 2019
    So happy for you Mac! This is bringing tears to my eyes!
     
  15. SurferGirl

    SurferGirl Member

    34
    5
    8
    Nov 7, 2020
    You mention the recovery following the Gentamicin injection was hell. If possible, could you be more specific. I am that 70+ person who will be seeing a specialist in January to determine the next step to take in my case. I have had 4 steriod injections but regular ENT wants to be sure we are not missing a window for better/more extensive treatment, possibily even surgery. I would love to know what to expect should he decide to begin with the Gentamicin. I am praying, even with the side effects, this will stop the vertigo, although I don't think falling over would be a good thing at my age. I've given into living with the tinnitus that sounds like the constant reving of a car engine. Any insight would be helpful. I'm glad to know you found some relief and peace with this horrible disease.
     

Share This Page