Did you suffer from ear infections as a child?

Wow. I already learned something new from that site. I feel kind of dumb for not realizing this earlier, but the Dr. talks about controlling your sodium intake, not just keeping it UNDER the specified amount but regulating the intake of sodium so you have steady levels. Doh! So much for my plan to go low to no sodium in the morning and a big bang of sodium on a scrumptious dinner at night.

 

Interesting about sodium restriction and MD reduction. Basing what I have read on here, I got the impression that very few people found relief from a restricted sodium diet where Dr Rauch indicates with sodium reduction and/or use of a diuretic helps 90% of MD patients. But I also noticed that he was really only referring to stopping vertigo. So he seems to only be able to stop vertigo not the other symptoms? Isn't the U of Mass where Dr. Gacek works? They both have very different paths to treat MD. From what I read on here that if the AV's work for you that it relieves the other symptoms of MD as well (fullness, some of the tinnitus, hearing loss, distortion, and noise sensitivity).

 

When I was first diagnosed in 2000 I had great results with a low sodium diet and diuretics. I was ab le to control most of my vertigo attacks with 2mgs of valuim When my meniers turned vicious I turned to Dr. Rauch for help. You are correct both Docs have very different paths. Dr. Rauch does not believe in the AV theory. Dr. Rauch is at Mass Eye and Ear Infirmary a teaching hospital affiliated with Harvard Med School. Dr. Gacek is at UMass. When I heard about AVs I was in a horrible place with my symptoms and could not wait to see if they would work for me. I was desperate and Dr. Rauch offered me a way out and I took it. Best decision for me. I returned to a normal life.

 

Can you elaborate on "vicious"? Wow...that makes this sound so scary. You did not say what Dr. Rauch did for you? I am sure I read it somewhere in you past posts. I am assuming an operations. How are you now? I hope much better!

 

Can you elaborate on "vicious"? Wow...that makes this sound so scary. You did not say what Dr. Rauch did for you? I am sure I read it somewhere in you past posts. I am assuming an operations. How are you now? I hope much better!

What I mean by "vicious" ....First understand that only 3% of the menieres population will develop drop attacks. Please keep that in mind as you read on..

I was diagnosed in 2000, had my attacks pretty much under control. I would go months without an attack and when I did have one it would last about 24 hours and be done. In 2010 the attacks came more frequent and would last much longer. I would start out with severe head pressure only on my right side around the back of my eye. My ear felt very similar to what it feels like when you have water in your ear. I would lose my hearing and the tinnitus would begin to roar. I knew that the next symptom would be a vertigo attack. Sometimes the ear pressure was so bad and the roaring so loud that I would pray to please have a vertigo attack because I knew once I did the symptoms would be released, no more pressure and the ear would return to normal. What did not come back was my hearing. I would be totally wiped out for the next 24 -48 hours after the attack. This went on for about 2 years and the attacks were coming on a regular basis. One day I was out walking with my husband when suddenly I found myself face down on the ground. I remember thinking to myself did someone come up from behind and hit me in the back of the head with a bat? Am I having a heart attack? Lucky for me I fell into a grassy area away from the cement walkway. Unlucky for me, I tore my rotator cuff, and was knocked out, only for a few seconds but enough to know that something very bad was going on. My poor husband had no idea what had happened. He thought I had tripped but realized that I went down so hard and never attempted to control my body from the fall. There was no controlling because I had no clue as to what happened. It was not a vertigo attack, it lasted only a few seconds and when it was over I was fine. No vertigo. I went home that day and I Googled violent vertigo attack...I really did not know what else to call it. Up came "Drop Attacks" I started to read and sure enough it was exactly what I had experienced. I thought to myself this can not be happening to me. I tried to talk myself out of the seriousness of the fall but there was no way I could. Especially when I scared my husband half to death. I was out of town at the time and I promised him that as soon as we returned to our home I would contact my PCP. I continued to have what I call mini-spins, quick rotational vertigo they would end as quickly as they came. Then I had a bad drop attack while I was driving my car. Again I was lucky because it happened early in the morning, and in a parking lot where I was driving very slowly. I felt as though someone was sitting in the passenger seat and took my head and pulled it down onto the passenger side of the car. I was the only one in the front seat of the car. It was quick and over in seconds. I was so scared. I didn't know if I should continue to drive home or if I should pull over and call my husband. I felt perfectly fine so I drove home. At this point I realized I am in trouble. I come to this forum and start reading and searching for answers. One of the posts had the link for Dr. Rauch's videos. I watched the videos and researched Rauch. I live an hour from Boston so I made an appointment with Rauch. When I told him my story he was very frank and straight forward with me. He told me I had entered a whole different ball game with the disease. Drop attacks are something you need to address and if you don't, you should not be driving, you should not be riding your bike, you should not climb a ladder etc. etc. He suggested I try gentamicin shots and see if I would have success with getting rid of the vertigo and drops. I did have one shot and was vertigo/drop free for 8 months. But I felt like crap every single day. I was exhausted everyday all day. I had brain fog. My ear felt as though it was three time the size it was. I started in with mini spins again and I said to myself enough, I can not live like this any longer. I went back to Rauch and he said I could try one more gent shot or I could have a labyrinthectomy. I had made up my mind after the first gent that I was not going to have another. I had read on this forum and conversed with a few people who had great success with the laby and I decided that was the route I would take. My hearing had bottomed out so I felt I had nothing to lose. My laby was done in October 2012 and I have returned to a full, symptom free life. The stress of not knowing when an attack would happen is gone. The monkey on my back is gone. I do have tinnitus but it really does not interfere with my life. And of course my hearing in my meneires ear is gone. I live a full, rich life. I am very thankful to this forum.

So that is what I mean by "vicious". It was for me, but once again keep in mind that it only happens to a very small percentage of people.

 

Red - you are so right.

"vicious" is the right word.

I drove home last night had a beer and checked some emails. Bang - the room upside down and me hanging on to the desk fighting for what seemed my life. And screaming I have to admit.
That was a drop attack out of nowhere. First in a couple of years. Thank God I was sitting down as I dont know how much damage would have been done smashing into a tiled floor. As for the driving - I shudder to think - keys to be thrown away.
That was truly a life changing and freaky event. Scared - you bet.
As Red says only 3 % or so will have a drop attack so the odds are good that most wont have one.

As I said to my wife you need to experience one to understand. They cant really be explained.

 

As Red said, they are game changers because they can kill you and others if you are driving.

Rauch is one of the few who gets this disease as he has probably seen the worst of the worst. He was the one who told me "Joe you have three balance systems and you only need two to function and live a good life"

There are a few people on this forum who he has put a Cochlear Implant into a laby ear and they are doing great.

 

I have had a few what I believe to be drop attacks in my time. One saw me head-butting the wall as I was putting a nappy in the bin, twice I've head-butted the grass whilst cutting it and I've had a few other occasions where I have had sudden involuntary movements leaving me on the floor, normally followed with 5 seconds or so of intense nystagmus. But the last one is probably coming up to a year ago now. I just don't want people to think, right I've had a drop attack best get it drilled out, it might not necessarily come to that. When I was having them my menieres was at its most intense, my inner ear was very irritated. Things have calmed down quite a bit since then.
Hope I haven't jinked myself..

 

I just don't want people to think, right I've had a drop attack best get it drilled out, it might not necessarily come to that.

What makes you think that anyone would have a drop attack and run to get the ear drilled out? Most people would consult with a specialist and find out if they were having drop attacks due to meniere's or if there might be another medical issue involved. After consulting the person could make a decision as to what is best for their situation. Don't assume that anyone would choose to have their ear drilled out based on reading a post. Best of luck I think you are very fortunate to not have had anymore attacks.

 

I have had what I thought were drop attacks. I've fell uncontrollably head first into a mirror but thankfully didn't break it. I felt like someone shoved my head violently toward the windshield when driving, but somehow I brought car to a stop. I've had other similar experiences but have never had doc that could confirm drop attacks. Maybe they were just a MM spin. I had lots of ear infections as a child & have had a ruptured ear drum.

 

did those tubes help Meniere's?

 

I don't know if it is the "same" tube but I know that some people do have a shunt put in to try to help balance the fluid. Believe that there are some that it works completely, for some it worked for a while, and for some not at all. I know for Meniere's it is called Endolymphatic Shunt.