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Menieres journey - Should i accept gentamicine injection

Discussion in 'Your Living Room' started by Coucou, Aug 27, 2021.

  1. Coucou

    Coucou New Member

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    Aug 27, 2021
    Hello.

    i m 35. Since end june 2021.I have severe symptom of meuniere.

    i have vertigo diziness crisis during 8-12 hours every 2-3 days.

    it always start with ear fullness and high titunus then hearing reduction then balance issue. then 2 hours after the vertigo and diziness strike.

    I must lay on my bed without moving the head. If i move to much i got nausea because i feel my head is flying then i end up vomiting.

    after 12h i start to recover my hearing and balance but i know the next crisis is on two day... and it s quite depressing (it's the 23th crisis since july T_T)

    i m on betahistine. it seems to avoid rotational vertigo but i still have vertigo diziness during the crisis.

    the hospital proposed me the gentamicine injection.

    but i m not sure if should take it now because my hearing is ok and i wanted before to try all non destructive medecine before ( diuretic. antiriviral. vestibular reduccation. benzodiazépines .steroid injection )

    Should i accept directly the gentacimine or ask for other treatment and keep gentacimine for the end ?

    thanks for reading me d sorry for the mistake. :)
     
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  2. Marta

    Marta Active Member

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    Hi Coucou
    I am sorry to hear you are going through all of this.
    Many of us here responded well to non invasive treatments. There are some for whom nothing worked and they decided to move on with surgeries or an invasive treatment such a a gentamicin shot. I am surprised that your doctor, after such a relatively short period of time, has offered you one.
    Looking at myself and my Meniere’s journey I personally would have gone for the gent shot as I suffered a lot and nothing would help. However I was never offered one. Later on I was offered a non destructive surgery that brought my life back.
    Perhaps try antivirals, John of Ohio regimen, reduce your salt intake (diet)There is loads on the forum regarding the above and many more , you just have to browse.
    There is a solution for everyone. Just stay strong and fight for yourself.
    All the best
     
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  3. Coucou

    Coucou New Member

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    Hi Marta,

    Really thank you for your kind reply.

    Yeah, I was expecting to try all non invasive treatments but hospital proposed nuclear solution.
    I have ask a appointment with my ENT to discuss with him and have his mind.

    You also sum up my dilemm because i really want to forget these vertigo and move on.

    Having a vertigo crisis during during 8-12 hours every 2 days is exausting and i never have to time to recover.
    My morale is very low. I feel that my life have stopped since theses crisis vertigo :(.
    Even if my wife (which is wonderfull :)) try her best to support me.
    I see that it start to be difficult for her (all chore, taking care of our 2 son. etc on her own) and it start to affect her.

    It breaks my heart to don't be there when they need me, because i'm always sick or exhausted by repeated crisis.

    About the non destructive surgery, i suppose you have the Endolymphatic Sac Decompression ?
     
  4. Marta

    Marta Active Member

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    I know where you are coming from Coucou.
    My attacks were also very frequent- 3 to 4 per week lasting anything between 15-22 hours. And they continued for nearly half a year.
    During that time I tried anything and everything including antivirals purchased form China. (God knows what they really were!)
    The surgery I underwent was EDB- endolymphatic duct blockage.
    Stay strong and do not give up. Your solution is out there and you are going to find it.
     
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  5. LuisMeniere

    LuisMeniere New Member

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    Aug 19, 2021
    Dear Coucou

    I have done the gentamicine injection around 7 years after the confirmation that I have Meniere. My experience is not very good with gentamicine because in my case It didn't have much effect. When i done this i had already lost 50% of hearing.

    But I know people that everything went well and was resolved. If you have that many crises I think you should move forward. You cant live like that.
     
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  6. JonBubo

    JonBubo Active Member

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    gentamicine is a dreadful ototoxic drug. Do not trust the hospital. They have nu clue how to treat except to charge You fot something. You state that gent and steroids are safe...they are absolutely not. What have you done on the antiviral front? What are you doing naturally for inflammation? All these things effect your goal. From ginger and turmeric to CBD to diet you can reduce inflammation and help the cause cept the root causes are what the inflammation comes from so those also get addressed at same time.
     
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  7. Coucou

    Coucou New Member

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    Aug 27, 2021
    Marta,

    Ok, it seems you have lived my situation... I'm glad you're in good condition now :).
    Did the crisis start to enter in remission with time or this is the EDB which have stop the crisis ?

    LuisMeniere,

    My main concern is about potential hearing loss because my ear is fully fonctionnal.
    But also never get a good balance again or meniere go bilateral because I just started to have it.

    But i'm not sure i can handle 6 month of meniere with a 8-12h crisis every 2 days. :(
    that's why, I hesitate to accept the gent inject without having tested all non invasive solution.

    JonBubo,

    For the injection I know the risk about hearing loss and other issue.
    But i agree that the hospital didn't say everything.
    When i read all the thread about gent inject and what they explain to me, i'm not sure we were talking about the same thing.

    About Antiviral front, i asked for antiviral to Hospital but they refuse because they don't know :(.
    I'm now asking my ENT or primary doctor.

    About diet i have removed alcohol and cafeine (cafeine really miss me ! :D), I'm trying to reduce salt but quite difficult :(.
    I wasn't aware that CDB or ginger and turmeric could help, i'll try to get some.
     
  8. LuisMeniere

    LuisMeniere New Member

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    I understand your fears but with the evolution of the disease you will lose your hearing where you currently have the meniere. With the genta you will not go deaf overnight but you'll lose hearing in that ear
     
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  9. Marta

    Marta Active Member

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    Coucou
    In April, roughly 6 months before the surgery, I stated taking Lauricidin (Monolaurin- there still should be some threads about it here) which reduced the attacks to 1 every month. It helped me keep my job and survive until the surgery itself. Just before the surgery my ear was full and I knew another attack was on its way. It never came though as I had EDB just in time.
     
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  10. Coucou

    Coucou New Member

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    Thanks for the advice.
    I'll give a try to Monolaurin + Vitamin C B5/B6.
    then JOH diet + bioflavonoides + L-lycine + Pycnogenol.

    I just ordered them.

    If It can bring down my crisis to 1 per month i'll be very happy and let me time to explore all way before gent or surgery :)
    I'll keep you informed about the progress.
     
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  11. Marta

    Marta Active Member

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    Just a thought- start with one supplement/remedy at a time. Otherwise you will never know what is helping you.
    Good luck
     
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  12. LuisMeniere

    LuisMeniere New Member

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    Aug 19, 2021
    then tell us the result you had with taking the supplement
     
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  13. Coucou

    Coucou New Member

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    Yay, i'll receive thursday all the supply.

    I'll start with Monolaurin first ! :)
     
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  14. Marta

    Marta Active Member

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  15. Coucou

    Coucou New Member

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    Aug 27, 2021
    Thanks Marta, Interesting article.

    So i have received all the stuff ( it makes a lot of bottle :) ).
    I just make a mistake with vitamin C, the product was named vitamin C 1000 and it does not contain 1000 mg vitamin c ( Damm marketing :( ).

    Meantime, i have refused the gent injection because all standard treatment have not been done and visited another ENT.
    For me, Gent will be the very last solution before the laby surgery.

    He put me on diamox, i'll wait one week to see if it make effect, then i'll try monolaurin.
     
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  16. Coucou

    Coucou New Member

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    Update after 4 days on diamox :

    - I have crisis more often (every 1.5 days) :(

    - No hear audition loss or ear fullness before and during the crisis :)
    - the crisis is less intense, it cause me less nausea and diziness (which make me recover faster) :)

    it seems the diamox is making my symptom evolve, but too early to conclude something.
     
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  17. LuisMeniere

    LuisMeniere New Member

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    Aug 19, 2021
    Lets wait for more days to see the evolution! Good luck! :)
     
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  18. Punture

    Punture Member

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    Do people recommend monolaurin or olive leaf extract or both?

    (on top of l-lysine)
     
  19. JonBubo

    JonBubo Active Member

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    i would NOT do both at first.

    do one at a time using a small dose and gradually work upward in dosage. this will help you navigate any herx or die off symptoms.
     
  20. Coucou

    Coucou New Member

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    Aug 27, 2021
    update after 8 days.

    diamox seems not effective on me. all the symptom are back as usual.

    i ll start monolorin today.
     
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