Meniere's Disease Support Group
Meniere's disease is a balance disorder of the inner ear. The symptoms of Meniere's are variable; not all sufferers experience the same symptoms. However, "classic Meniere's" is considered to comprise the following four symptoms: Periodic episodes of rotary vertigo, hearing loss, tinnitus, and a sensation of fullness or pressure in one or both ears.
Poison? Gentamicin ?? It's an antiobiotic from what I was told!!! And to clarify for everyone, REPLY #5 from FJ Girl was an excellent wikipedia type explanation of the procedure(under the post Pity Party, Party of One). I am DESPERATE obviously. Interestingly the initial injection (he inserted a tube in the ear so he didn't have to anesthesize each time, but just inject thru the tube) lasted Tues-Thursday evening(late) at which time I had a severe dizzy episode (not vertigo) and threw up! My ear seems to feel more fullness because I suppose I'm imagining the tube in there....so I can't say the initial procedure did much more than what an oral steroid would have done...temporary "euphoria" feeling "normal", and then suddenly back to dizzy. Although I'm usually wiped out the day after an episode, but Friday was relatively normal. Saturday (today) the dizziness kicked in again. ENT said patients might have to have it once a week initially and then it can be decreased eventually to twice a month, every other month, etc.I'm not in to trying this and then trying that...I want it gone NOW!!!! There are several institutions in the US that specialize in treating Meniere's and that will be my next step if this proves to be time consuming and a "band aid" , or temporary. The rest of you might think it sounds foolish, but a friend of mine who suffered with this went to the HouseEar Clinic in LA (I've mentioned this in other posts) and had the surgery(snipping the balance nerve) over 15 yrs. ago and no problems since. Another friend was on SERC (Betahistine Hytdrochloride not available in the USA) she got a physician to write an Rx for and went to a Canadian pharmacy online to have it filled. She took it from 1995ish to 2004 and had no symptoms, so she stopped the SERC. Then suddenly this year 2015 the dizziness started to return after being symptom free all those years. Not sure what her plan is now. There are different things one can do, but I do not want to be a blogger who talks about having this for 5 yrs,.6yrs., 7,8, 20 yrs. My parents lived to be in their 90s(not with MD)and I'm 72, so I want quality of life if I'm healthy otherwise(which I am...weight is controlled, BP usually 108/60, cholesterol 170 and on NO OTHER MEDS, so this Meniere's has to be GONE!!! I refuse to live another 20 yrs. like this!!! I'll do what works and ASAP...so this is my answer to those of you who ask if I've tried this or tried that...at my age I don't have time!! I take Meclizine and Xanax, twice a day if necessary, to ward off any severe episodes usually and walk my dogs when I can. This "disease" can get better over time for some, but it can also get worse for others...so, as I said, I don't have time! Please don't judge me as being disrespectful to those who are offering suggestions/help...just want you to know where I'm coming from! Sorry for the long post!
I'm sorry the Gentamicin didn't work for you the way you wanted it to. Unfortunately this disease does not affect everyone the same way so what works for one person may not work for another.
I don't think anyone is judging you - honestly we all just want everyone else to get better. We all want to be healthy and enjoy the days we have left.
I, too, get a little annoyed when people ask, "Have you tried....?" I've had this disease for 22 years, I've tried everything except the surgeries because for me there is not enough of a guarantee that it will work and without completely taking away what hearing I have left.
We each have to do what we can for ourselves and hopefully to be supportive of each other on bad days and good days.
Hopefully soon there will be a breakthrough with this disease. In Australia and Europe they are leaning more toward this being caused by a virus - the same virus as chicken pox and/or herpes. I have heard that some people over there are having measured success with an Acyclovir regimen.
At this point we just have to do what works best for us and understand that when others have opinions, it's just that, opinions. BUT, these opinions are based on their experiences and while they may not know our story, they know their's and we all hope that what we learn and experience may be able to help someone else.
Also, we have to understand that not everyone has the same comfort level with risk - what one person may be willing to do is not the same as another person. We are not here to judge but to be supportive and hopefully find answers.
Best of Luck!
In the 12 years I've had Meniere's I've decided I would try everything possible to NOT have any chemical or surgical procedure that would "kill" my ear. I'm glad I made that decision because I have been dealing with symptoms in my "good" ear. When both of them are ringing I can hardly concentrate or function.
If anyone can get relief from this disease more power to them.