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mbach

Gentamicin: A Complete Experience

  1. mbach

    mbach New Member

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    Mar 10, 2015
    Hello,

    I've received a lot of information about Menieres from this board over the years but sadly never had anything positive to contribute until now.

    It's been a little over 2 months since a single Gentamicin injection completely changed my life in a positive way.

    I am going to provide a very detailed account of everything I experienced over the past 2 months with the hope that it will provide some insight for those trying to decide what to do about the amazingly awful symptoms of this disease. As I found during my research, it's difficult to find information from those who are no longer suffering as they typically move on. I also hope to leave this entire experience in the past, but before I do, let me share my story.

    I will first briefly describe my symptoms as well as what was tried over the years so you can compare with what you are currently trying.

    Menieres surfaced after a rather un-eventful upper respiratory illness in 2007. Congestion settled into my left ear and never seemed to dry up. Nasal steroids didn't do the trick and the low rumbling tinnitus soon followed. This persisted for about a month until I had my first vertigo attack.

    After visiting several doctors, the consensus was Menieres and I was promptly put on a diuretic. I also quite quickly began the John of Ohio regimen. I am quite diligent with everything I do, so I stuck with it for at least 6 months. I don't believe it provided any relief.

    Vertigo occurred every month or so. This was full rotational vertigo. In my experience the worse kind. The heavy spinning would last 15-20 minutes followed by hours of dizziness. Valium really helped take the edge off. (under the tongue - 5mg)

    I tried many things. NUCCA, 6 months of antivirals, TMJ treatment, diuretics, supplements, low sodium, etc. Nothing helped.

    In 2011 I decided to try the Endolymphatic Shunt surgery at the House Ear Clinic in L.A.

    Following this surgery, I no longer experienced full rotational extreme vertigo. But it certainly didn't stop the misery. I would still have frequent attacks of vertigo that I can best describe as side to side movement.

    Prednisone helped to control the worst of it, but this is not a drug to stay on long term and it didn't help completely. But it allowed me to get through the day and even continue to travel. As soon as I weened off of it, vertigo returned.

    I also tried betahistine which didn't help and then finally expensive hemp oil which I believe acted as a placebo for a short time but didn't end up helping.

    In 2014 I began to experience drop attacks. These are sudden and very heavy bouts of quick vertigo lasting seconds but strong enough to throw you to the ground. I could no longer be trusted to drive. I am fortunate to run a technology business from home, but I was not helpful to my family at this point. It was time to do something definitive.

    The first thing I tried was an injection of dexamethasone, a steroid, just to see if it would have an affect considering I responded so well to prednisone. With this I would see total relief for about a week and then a return of symptoms. I tried it twice. Same result each time.

    Now I needed to decide which destructive treatment to pursue.

    1. Labyrinthectomy - total destruction of the inner ear was completely out of the question in my opinion. If I leave the inner ear intact, I can get a cochlear implant later on should menieres develop in the other ear. Not worth the risk.

    2. VNS - cutting the nerve works well but it requires intra-cranial surgery which carries some risk. This surgery also requires time in ICU and 5 days in the hospital.

    3. Gentamicin injection - simple and quick procedure, some risk of hearing loss

    Ultimately, the gentamicin injection sounded so simple compared to the surgical methods. I knew that all 3 would require rehabilitation, however the actual process of destruction with the injection was so much simpler and therefore attractive to me.

    Before proceeding with the injection, I had a VNG test. I only had about 40% of my balance nerve function left. Menieres had slowly destroyed it. It is my understanding that the more function left in the nerve, the more profound the recovery. If you have 80% of the nerve left and suddenly destroy it, your brain has to work very hard to compensate.


    MY EXPERIENCE WITH GENTAMICIN

    I drove to House Ear's Orange County clinic from my home in San Diego. Yes, you can drive home after treatment without issue!

    The Injection
    -----------------

    Laying on my side, a numbing agent is applied to my ear drum. This stings a little but only for a second. 30 seconds later a small syringe is inserted into the ear drum. I could not feel the insertion. Afterwards, the gentamicin is injected into the middle ear. There is a stinging sensation as it's injected, but again this only lasts seconds. Some of the solution ran down my eustachian tube into my throat. This also burned a little but only for seconds. It's best to try your hardest not to swallow to minimize leakage into the eustachian tube. The injection is over and now I lay on my side for 30 minutes with the hope that some of the drug will enter my inner ear.

    I am told the inner ear doesn't always get enough of the drug which is why sometimes 2-3 injections are needed over time.

    I had decided to do a "low-dose" treatment, meaning space injections out at least 1 month apart. This seems to lower the chances of hearing loss which is a potential side effect.

    After 30 minutes I drive home. I feel no effects of the injection.


    The Waiting Game
    -------------------------

    From all I read about Gentamicin, once it kicks in you'll know it.

    Two days after the injection, I felt very off balance and woozy. This lasted most of the day. The next day it was gone and I had my doubts that the drug had done any damage that quickly. Turns out that this was simply a long lasting menieres attack. I believe the injection triggered it some how.

    Some people say it takes 3 days, some 5, in my case it took 7 days to begin feeling the effects of my balance nerve being destroyed.


    The Compensation Process
    -------------------------------------

    Once the gentamicin took effect, my brain had to figure out how to achieve equilibrium again. This is the process of compensation. It's not fun, but compared to vertigo it was a cake walk.

    It started slowly and ramped up over a few days.

    I felt very off balance but it was really only an issue when trying to walk. I was actually able to sit still and work on my computer as long as I didn't move my head. Any sort of movement that required the balance nerve to function created a sensation of motion in my field of vision. But unlike vertigo, as soon as I stopped this action, the sensation also stopped. I wasn't able to work for hours at a time as it's a little hard to focus, so I took frequent breaks.

    I knew ahead of time that the more active I remained, the quicker compensation would be achieved. I continued to do basic yoga as I've done for years. It was not easy to maintain balance, but I knew it would be a great help. I also did head shaking exercises 3 times a day. You can find details of these online. You basically look side to side and up and down quickly a bunch of times. You do it with your eyes open AND closed. Can be uncomfortable, but certainly works your brain to compensate. Lastly, I tried to walk as much as possible around my neighborhood and around my home. The worst thing you can do is sit around or just lay down. Your brain isn't learning that way.

    One thing that scared me at first was when I woke up with double vision. This lasted about 15 minutes and went away. This occurred each morning for about 8 days, getting more subtle each day.

    The "off" feeling was fairly profound for around 2 weeks once it kicked in. I had at least a week where it was strong all day. Then things slowly and I mean very slowly began to improve. If I had to drive myself to work, I would assume 2 weeks into this I probably could have. Not including the first week while i was "waiting" for the Gentamicin to take effect. I suppose many people could go to work right after the injection and just wait for it to take effect before taking a leave. It didn't just begin like a ton of bricks hitting me in the face, this was a gradual build up. So you would have time to figure out what to do.


    2 Months Later
    --------------------

    I had a second injection scheduled for a month after the first. But I haven't needed it.

    I still have the fullness and tinnitus that one would expect from menieres, but no more vertigo. Zero.

    I can tell when I would normally have an attack. There is a mild sensation of dizziness followed by a clearing of the fullness. That mild sensation tells me that the nerve was not completely destroyed, but enough that I don't feel much anymore.

    I don't believe that I lost any additional hearing from the injection. My hearing was already very poor, so it's hard to tell.

    There is still a slight amount of compensation occurring mainly with a slight bit of feeling off balance, but I can tell every day it gets better.

    I now experience Vibration Induced Nystagmus which is a side effect of unilateral vestibular loss. Basically when something vibrates against your head like a hair trimmer or chewing on carrots, you will have a bit of nystagmus. Goes away as soon as you remove the vibration. Strange for sure, but hardly an issue. I've also read that this is typical when there has been a unilateral vestibular loss.

    My life has returned to me.

    No more drugs, no more mass supplements, no more crazy low salt restrictions, no more anxiety, no more depression, no more wasting energy dwelling on my condition. I am happy again. My family has me back, my children have a normal dad.

    I hope this is helpful in your journey towards relief.

    Feel free to ask questions as I will monitor this post.

    marc
     
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  2. VikingMan

    VikingMan Guest

    Congrats on getting your life back. Wonderful story.

    Did you also try something to deal with a potential candida source of the meniere's?
     
  3. VikingMan

    VikingMan Guest

    Please understand that I'm not asking the question with any intent of shaking a finger at you. this disease is so damned invasive and destructive, there are times during a bad attack that I would do almost anything for relief, consequences be damned. I would never condemn another's choice in dealing with this. It's just that the origins of your story sound very similar to mine. I have had chronic sinus issues for YEARS. And since you didn't talk about trying an approach dealing with something like candida, I wonder if you did and consequently if the cause of mine might be more likely to something like that.

    Also. How long was it before you were able to go back to work after the injection? If my own attempts at alternative therapies proves unsuccessful, gent is probably what I will chose next.
     
  4. mbach

    mbach New Member

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    Hi, yes, I've tried so many things that I forgot to mention I was on Nystatin ( a fungal medication ) for many months. I'm guessing 4-5 months. As with the others, I didn't notice a change in symptoms.

    I think the question of "how long" to get back to work depends on the result on your balance test. If you've had menieres for many years which has resulted in alot of damage to your balance nerve, the recovery is shorter than someone a year or two into it.

    For me, it took a week to begin showing damage and 2 weeks before I felt comfortable driving.

    I work at home, so I continued to do many things in short snippets on the computer.




     
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  5. VikingMan

    VikingMan Guest

    You must have found a very open minded doctor, willing to treat so many possible causes of the disease. I'm having trouble finding a doctor like that.
     
  6. VikingMan

    VikingMan Guest

    There have been multiple etiologies proposed as the cause of menieres. One of the potential etiologies is auto-immune, the body attacking itself. I personally believe there are probably many causes, anything that can cause long term inflammation in the inner ear, but that's a layman sufferer's point of view. Most folks who have meniere's have been prescribed a short duration course of steroids like prednisone. One of their functions is to inhibit immune system function. Did your doctor ever prescribe steroids? And if so, did you ever experience short term relief with them? If so, that might explain why none of the other treatments ever worked for you. Indeed, other than long term immuno-suppresive therapy, which is usually really bad for your kidneys, how would auto immune initiated meniere's disease ever be mitigated except through invasive procedures. You are just screwed! Maybe something like gene therapy could someday fix that.

    Makes one wonder. Why hasn't a doctor out there developed some kind of panel of tests that could pinpoint the cause of this disease from this pool of known causes? Then you would know exactly what kind of therapy to pursue. Or even, perhaps more than one therapy if your disease is caused by more than one thing.

    Sign. I hate this bastard.
     
  7. nicmger

    nicmger Member

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    Marc, really appreciate the thorough recap. While I had read from some that the gent was effective (for some not) I had not read such a complete account of the procedure itself (definitely sounds more acceptable than what my brain imagined for a "needle stuck through my ear drum"!). Also the explanation of what you felt (and when) for compensation after. Obviously it is different when someone says "I had to relearn" versus your complete summary. I find that to be awesome as I believe it could minimize someone's anxiety if they/their doctor believe it would be a good option for them. (Fortunately I have been enjoying good results thru anti-virals..hoping I won't need to look any further! :D)

    Congratulations on your success and the fact you can now fully enjoy & participate in your children's lives. That is priceless. I am very happy for you and thank you again for taking the time to share your story.
     
  8. Jaeger

    Jaeger Member

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    I also had the injections and have had good success with them. I still need to get a shot every 6-12 months as it doesn't fully kill the nerve and eventually I start having vertigo again. However when I do get vertigo it usually only mini spins that only last a few minutes now instead of the hours long ordeal like I use to get. They also cured my drop attacks, I haven't had any since my first injection back in 2012. It not a 100% cure for me, but it beats anything so far I have tried.
     
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  9. redwing1951

    redwing1951 Well-Known Member

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    New Hampshire/Florida
    Great post for anyone considering a gent shot. Thanks for sharing your experience in such detail. Best of luck to you, keep us posted on your progress.
     
  10. mbach

    mbach New Member

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    Yes, I always heard the "learn how to walk again" phrase being thrown around. I'm not sure it's ever that profound. Possibly for someone a year into the disease with full function of their balance nerve. If you go from 90% function to 0, it's going to take a toll on the brain's ability to figure things out.

    For myself, it was more having to level things off. Everything is sort of out of whack for a while. I could walk without issue. It's just that after a period of walking I started to feel a little motion sickness because the picture wasn't in sync with the eyes. That got better every day though and 2 weeks later it wasn't an issue. But the first few days I definitely had that motion sickness feeling when "pushing it" out on a walk. However, when you know that every step you take will make it go away faster, motivation isn't hard to come by :)

    marc
     
  11. MidwestMan

    MidwestMan New Member

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    Hello Marc,
    Thank you for sharing your experience
    Just curious how long you have had battled the disease
    before trying the gentamicin injections.

    Thanks for sharing
     
  12. mbach

    mbach New Member

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    Mar 10, 2015

    Around 7 years. I didn't want to do anything destructive too quickly just in case my other ear started to show symptoms.

    marc
     
  13. MidwestMan

    MidwestMan New Member

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    Mar 15, 2015
    Missouri
    Hello Marc,
    Thank you for your response
    I understand, and feel the same way
    My symptoms started in 2005 its been a long ten years
    again thanks for sharing your experience

    JB
     
  14. centrallanding

    centrallanding New Member

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    Hello Marc,
    Thank you so much for sharing your experience with the intra tympanic gentamicin injection. My husband, David, had this injection 3 weeks ago at Massachusetts Eye and Ear by Dr. Steven Rauch. What you describe is exactly what Dr. Rauch told us to expect. David was diagnosed with Meniere's in January and started having attacks of acute vertigo every 3 days in early March. After 7 weeks of that, David wanted the shot right then and there.

    He had an attack of vertigo 2 days after the shot (to be expected) and started feeling the effects of the gentamicin at about 5 days after the shot. He feels wobbly, but sometimes more wobbly than other times. What concerns me is that he has had 3 minor vertigo attacks. One of them tonight (which explains why I am on the forum at 1 am). It wasn't bad. He said things were moving counter clockwise in jerky segments or chunks. I know it wasn't bad because he didn't take valium or Zofran (Dr. Rauch said not to take these meds as it would interfere with recovery). He didn't vomit, he just went to sleep. He hasn't felt very good all day.

    It doesn't sound like this was your experience. We would love to hear from you and others about your experience with gentamicin.

    FYI Dr. Rauch has treated over 600 Meniere's patients with gentamicin. He has a 95% success rate. 20-30% require more than one shot. I also thought that gentamicin disabled the vestibular nerve. Dr. Rauch corrected me. It is toxic to the little hairs (cilla) in the vestibular labyrinth. These cilla transmit balance data to the vestibular nerve which sends it to the brain. Gentamicin is more toxic to the cilla in the labyrinth than the cilla in the cochlea. Dr. Rauch says 20-25% experience hearing loss with gentamicin.

    Cheryl
     
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  15. James

    James ''Everywhere I go there I am'' GS

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    Thanks for the very well written and hopeful post.Do you mind if I link it in the success story thread?
     
  16. mbach

    mbach New Member

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    6 month update...

    Hello. Thought I would stop by and provide an update now that it's been around 6 months since my single GENT injection.

    Overall everything has been great. I feel back to normal and am no longer scared about what "might happen" every single day.

    I still feel the pressure, etc... but no vertigo at all. What does happen is that I can still feel when an attack happens. I feel a quick rush and very slight dizziness which quickly fades. That is simply telling me that there is still some function left. Again, this sensation is mild and has even happened while driving with little effect.

    I am considering one more injection, maybe half strength, to knock out whatever is left. Would be great to not have that constant reminder.

    marc
     
  17. mbach

    mbach New Member

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    1 year update.

    Hi, just a note that I'm doing very well since having a 2nd injection. I was noticing some slight dizziness several months after the first, so I opted for a 2nd injection in October 2015. Since then I really don't feel anything. The balance nerve is not functioning at all. Problem solved.

    And for those that are curious... the recovery from the 2nd injection was very minimal. I was worried that it didn't work because I didn't feel any of the adjustment symptoms that I felt after the 1st injection. There just wasn't that much function left in the nerve for brain compensation to be profound.

    marc
     
  18. Marta

    Marta Active Member

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    Congratulations ! Thank you for sharing your experience with all of us! I know that if I am offered gent shot at any point I will not hesitate. Carpe diem!!!
     
  19. Vicki

    Vicki Guest

    thanks so much Marc for you detailed account and updates. I am so happy to hear how well you are doing.
    Stay well and keep in touch!
     
  20. Marta

    Marta Active Member

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    Is the pressure in your ears exactly the same as before the injection? The fullness in my ear drives my crazy that is why I am asking.
     

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