I can't thank you enough for sharing your journey on here. May you be healthy and happy for the rest of your life. Do you think the cause of your symptoms was auto immune disorder? Or do you know?
I would say little has changed other than the removal of attacks. Pressure does still exist, however the normal "fear" that was associated with the arrival of pressure has been eliminated. So in essence the pressure is not such an issue. The other thing that improved greatly is the daily mild dizziness that occurs with menieres as the brain is constantly confused by the fluctuating nature of the bad ear. The brain has been able to fully compensate as the bad ear is consistent with the signals it passes to the brain. So I really don't feel dizziness at all.
Do you ever feelings of imbalance? I have had a lot of gent treatment. For me it has made s big difference, I no longer get the really bad attacks but I do have imbalance. Sometimes it's very mild and hardly noticeable but some times I'm very wobbly. I have Vestibular rehabilitation to do so maybe that will help. Thanks
Vestibular rehabilitation is great! I had it and it made a BIG different to my balance. Now I exercise once a week only to keep up great results! Good luck and do not give up!
Marc, I'm very happy that you are doing so well.I finally linked this thread on the Success story thread in the database for people who need info. Thanks for updating!
Thanks marc for posting on your experience With the gents. I'm new to this only 1 year In . Don't know what is ahead of me but It's nice to have a plan down the road. Congrats to you and wishing you continued Good days and good health.
Thank you Marc for your story.... It really helps other people to have an idea as to what they are up against. I have had MD for over ten years now and could deal with it up until the past two years. I have been always dizzy but tried to deal with it, I am now having major attacks every couple of weeks . Tried everything you did with limited success and now am scheduled next week to start Gentamicin. Praying that it works, will post later my results. Thanks again for your story!!
Just a quick note to say everything is still going very well. I have no symptoms of dizziness. I still experience fullness of course and some tinnitus. The hearing in the treated ear has mostly been lost, but it's a minor price to pay for freedom. I continue to recommend this treatment to anyone suffering with regular vertigo attacks. (but only those with unilateral menieres) marc
Marc, thought I would update my Gent experience.... Had 1 low dose Gent injection Nov 14th 2016.... took a couple of weeks then I was off balance for for 4-6 weeks occasionally.. Had hearing & balance function tests in Dec... They said hearing was about the same and I would NOT need another Gent injection now, maybe 6-12 months because it was working!! I have slowly been feeling ALOT better, have not had any major vertigo attacks where the room spins & throwing up since the Gent inj ( was getting that 1-2 times a week for the last year or so) ... Brain fog is almost gone and only occasionally feeling slightly "off"..... I feel a 1000% better compared to 3-4 months ago!! All in all I would say that the Gent injection works and have helped me a lot!!
Hello Marc. Thank you for posting your experience with Menieres. As a result of your post I went ahead with the Gent injection for unilateral Menieres. I have had pretty well the same experiences with the disease and the treatments you described, over the last four years. Four weeks ago I had a single Gent injection. I've had basically the same experience as Marc with the Gent. The number of days to "kick in" were slightly different. I think the Gent induced balance loss started at 5 days. I now have zero vertigo and zero motion inducted dizzyiness. I was having one vertigo attack and 3 or 4 dizzyiness episodes per week while on 20mg of Prednisone a day. I still have a bit of dizzyiness/blurred vision caused by the Gent but its nothing compaired to the the problems I had before. The Gent inducted dizzyiness is nothing and it is getting better slowly. I'm now off the Prednisone which I had been on for nearly a year with increasing doses to remain effective. The way I see it I have my life back even if I'm only about 85-90% better.
ty for sharing, i am 69 years old and after having about 4 vertigo attacks about 4 years ago i had 3 injections and it stopped the vertogo attacks but now 4 years later i am having equilibrium dizziness, have you heard of what to do about that?
Hi Marc et al, Almost 5 years ago I was in a nursing home recovering from double-knee replacement, and developed some kind of serious & mysterious infection they were unable to cure with any regular antibiotic. As a result, they gave me gentamicin, delivered via muscular injection 2x daily for a week. It cured the infection, but shortly after returning home I woke up one day with severely diminished hearing, and the feeling of being on a rocking, bouncing trampoline 24/7. Eventually, after months of seeing doctors who could not identify what this was, I was sent to an ENT specialist in Syracuse who told me (after clinical tests) that I had MdDS (Mal de D'Embarquement Syndrome) -- a form of rocking vertigo which is basically untreatable and incurable. (It most frequently occurs when someone goes on a cruise and the feeling of being aboard continues when on land. Mine just started out of the blue one morning when I awoke, for no reason. ) He also told me that if anyone gave me any more gentamicin I would become totally deaf. As a result of the severe, constant and unpredictable imbalance, my life has been totally changed, and I now need a cane at all times. However, it just became even more complicated. I recently developed positional vertigo ON TOP OF the rocking vertigo, probably because my inner ear crystals were dislodged due to the violent coughing I endured during a month-long upper respiratory disease. Between the two conditions, my imbalance is much, much worse. I'm seeing a physical therapist who specializes in vertigo to treat at least the new dizziness vertigo, but she just told me to Google "osillopsia", which she said might be related to the MdDS. That, in turn, led me to Meniere's Disease, another imbalance condition that runs in my family. And, finally, THAT led me to an article in the "Autoimmune Review" which said that Meziere's Disease is an autoimmune condition which can possibly be treated by gene therapy using "viral vectors to protect, rescue and possibly REGENERATE hair cells of the inner ear." After all that, my questions are -- does anyone know of an MdDS/Meniere's connection? Does anyone know who I might contact about gene therapy? And, do you know of ANY doctor or medical institution that might be able to help? I'm 83, and would really appreciate any help I can get. Thanks, Lois
Lois, I think you may have been misdiagnosed. Gentamicin is a drug that is used as a form of chemical labyrinthectomy for Meniere patients to stop the vertigo. It kills your balance nerves. I would recommend you go to a teaching university and get a full work up on your vestibular system. My educated guess would be the gentamicin knocked out your vestibular function. It is usually given in the infected ear but when given intramuscularly as you got it destroys both ears/vestibular apparatus. Good luck Joe
