Grateful for you all

I’m sorry to hear about that experience. Definitely find another doctor, no point in seeing a doctor that is passing out flyers you can find on the internet.

There is a ton of info on this forum, and plenty of people here are living completely normal lives free of vertigo. There is hope, I promise that!

 

Yes you need to see a real ENT doctor, someone familiar with Menieres (what little that is known). The first one I saw blew me off and said you have age related hearing loss - get hearing aids.

I am vertigo free thanks to Betahistine, but could kill myself with the tinnitus.

Welcome to zombieland - sorry if I sound negative but I tried it all, low salt, no caffeine, no booze. Nothing worked so I eat and drink (to excess) all I want.

 

That was pretty much my experience also. This disease is a pain but we get by, lot's of treatments found on this site.

 

Same experience with 2 ENT here too. First one was a real bitch, next one appeared to have psychological problems. He still did nothing beside diazide meds and lost it in a meet after he asked me how i was doing and i told him i had pain in my ear, he got up from hes chair and started yelling like a crazy, hes neck turned red, he looked like he really needed psychological help.
Only other ENT is a 1 hour drive and of course i have a shitty car/cant afford the gas/ driving hour trigger my vertigo...

edit:both of them are gone from the ENT establishment, the last one sold hes house and we never seen him again in the city.

They ruined my relation with family doctor so i dont have doctor following me, experience was soo negative i dont want to see any of them, i will probably attack them physically if the story repeat itself(they make me feel like my survival is endangered, wich it kinda is).

 

I honestly think that most doctors treating this don't really know what we hear every day tinnitus wise or feel like on a daily basis with the fullness, vertigo, etc. etc.

WE NEED MORE RESEARCH ON THIS DAMN DISEASE AND WE NEED IT NOW !!!!!

 

There are excellent specialists in different places in the U.S. I think one of the best is Dr. Jennifer Derebery at the House Ear Institute in Los Angeles, California. I went first to a specialist at UCLA more interested in having a success rate than in addressing my actual symptoms.

Dr. Derebery has the very best testing equipment. She KNOWS this illness more than anyone I have ever encountered. Thanks to her, I learned I had "burned out" in December, 2014. Or so we thought. I should add that I have severe bilateral Meniere's, and my first major attack was May 11, 2002. Made me totally deaf in my left ear, robbed me of most of my hearing in my right, leaving distorted what remained, gave me crippling dizziness, a sense that I had an internal gyroscope always tilting off-axis, and between 6 and 9 sounds in my tinnitus. Nausea was a constant. I went through steroid treatment, different other regimens, different physical therapy, ultimately got a cochlear implant. I became low-end functional, but lost my profession and anything like a normal life. I became largely a recluse around the end of 2005, with brief relief in the years thereafter.

Here is an additional fact. For me, the great trigger has always been stress. Too much physical exertion, too much drama in my life. I did not realize that surgery was a major stressor as well. I have had a lot, as following my Meniere's, much of the rest of me started failing as well. I am about to have my 11th orthopedic operation in the last three years. The last two were massive--spine and a complex knee replacement. Following them, I have found "burnout" wasn't. My dizziness is greater. My brain fog, far worse. But the killer is the tinnitus. Feels like 90 decibels in there. Wakes me up. Makes it ridiculously hard to think, much less hear. But nothing can be done.
Now as I hit 74, all I can do is suck it up and adapt. Not so easy for those of you younger, still in the work force, unable to just vegetate.

So I end where I began. Use the Internet to search for an ENT near you with a clear Meniere's track record. Because absent that, they really are ignorant. Feel free to email Dr. Derebery and ask for a reference if you are far away. Or an appointment, if you are in dire straits and can get there. She is truly amazing. She may not be able to get your life back for you, but she will do her level best. Good luck.

 

Mass Eye and Ear Infirmary in Boston Massachusetts is another great place to research for what you are experiencing. They have some of the best neuro-otologist in the nation. You need to see a neuro-otologist. They specialize in the ear and how it connects to the brain. Good luck!

 

She has retired, sadly.