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Menieres journey - Should i accept gentamicine injection

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

  1. Punture

    Punture Member

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    Sep 4, 2021
    Have you asked your ENT for intratympanic steroid injection?
     
  2. JonBubo

    JonBubo Active Member

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    Apr 11, 2019
    Monolaurin good. Would also encourage you to drink plenty of water through the day (may actually help reduce symptoms) and consider taking a binder occasionally. A binder like activated charcoal can be used to pull out pharmas, antibiotics, toxins etc. Good tool to use occasionally with menieres.
     
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  3. Coucou

    Coucou New Member

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    Aug 27, 2021
    I have a meeting with another hospital next thursday, i'll strongly ask for steroid.

    I have start the monolorin since 2 days
    dosage : (2 * 1mg per day).

    At this time nothing revelant on my symptom.
     
  4. Coucou

    Coucou New Member

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    Aug 27, 2021
    Update after 5 days of monolaurin,

    at this time, nothing have changed, I still have same symptom and the crisis every 2.5 days .
     
  5. JonBubo

    JonBubo Active Member

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    Apr 11, 2019
    5 days will barely start anything in antiviral treatment of any kind.
    hang in there. put your mind at 2-3 months.

    ever so slowly you will trade symptoms of Meniere's for whatever side effects of the monolaurin is doing.
     
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  6. Coucou

    Coucou New Member

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    Aug 27, 2021
    Hello, quick update :

    Unfortunatly, my situation is still poor : more than 40 crisis of 8h for 3.5 month :(.
    I can't work anymore or keep care of my familly :(

    Monolaurin during 1 month didn't improve my situation.
    diamox during 1.2 month : no effect.

    I have also been diagnose with probable meniere after my visit to the hospital (according to VGN, VHIT, caloric test), my audio is ok between crisis, but one of my inner ear have lost 40 % of his vestibular function.

    An IRM 3T with hydrop protocol to confirm the hydrop and for chiari malformation is schedule

    Meanwhile, i'll ask my primary doctor a antiviral script, scan for cervical and TJM.

    The next step is : get a tube drain in ear and steroid injection for the end of this month

    If i cannot space out the crisis with steroid, last step will be :

    -try to find a doctor that do Endolymphatic duct blockage but there is not many surgeron that do it in french or it will be another endolymphatic surgery.
    or
    - accept to destroy inner ear with gentacinim or neurotomie.
     
  7. Roxie

    Roxie New Member

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    Jul 29, 2021
    So sorry Coucou that your situation has not improved.

    I too have Menieres and have had it for 32 years. As you know, there is no cure, you and/or your doctors can only manage the symptoms.

    I had my first endolymphatic sac enhancement surgery at age 43 but it lasted only 1 year and I went through it again for the revision. That held for 22 years (relief at last). My experience told me I waited too long in the very beginning to have the first surgery; I tolerated the ever increasing intensity of the spells for 8 years. I had already lost a significant amount of hearing in the left ear and was living a life of solitude.

    This past year it came back without warning and in megawatt force. For some reason anytime I sat in a chair that allowed for any movement (rocking etc.) whether I was rocking or not, I would get an attack so severe I envisioned it literally throwing me out of the chair and I was holding on for dear life. That was not the only thing that could trigger an attack, but it gave me a sense of things to avoid. I decided I was not going to tolerate the spells for long as I had when I was in my 40s. I started my research and found a new Dr. as my old Dr. had retired.

    Apparently I had been fortunate to be symptom free for as long as I was according to research (after 15-18 yrs it returns with the possibility of going bi-lateral).
    I opted for the Gent injections as being the least invasive procedure, as I could NOT go back to that way of life again, as you are experiencing. My hearing had already diminished to the point of being non existent in my left ear and, having Menieres in both ears, my hearing is reduced in the right ear as well. What little hearing that remained in my left ear was not affected by the injections, but I did lose my balance and had to let my body adjust to the right balance center taking over for the loss of the left. It was a 3 month experience and I would go through it again in a heartbeat because it was still so much better than having the dizziness and all that goes along with it. My 4 foot walking stick was at my side for the full 3 months.

    This disease is absolutely debilitating. There is no life as you can't go anywhere alone knowing the spells can happen in seconds without warning. I had plenty of ambulance rides, believe me.

    After 6 months, I am finally back at 100%, my depression has abated to normal levels, my energy has returned along with my endurance. Once the "brain fog" lifted, life was good once again. I sincerely hope you find the treatment that is best for you. Doing your research and seeking out others is the best thing you can do to educate yourself. I wish you so much good luck in your journey.


     
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  8. Marta

    Marta Active Member

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    Jan 26, 2016
    Hi Coucou
    I know it’s easy to say but… don’t give up and do not lose hope.
    I know it’s hard to find a doctor that performs the EDB procedure. Even here in London I was the very first first patient to have this procedure done which was,I believe, very fortunate for me.
    I know that if I had to go through the hell again I would not hesitate at all and opt out for laby.
    All the best
     

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