As I had mentioned, my situation was not getting better & I finally gave in & decided to go to the ENT specialist reccomended by my PCP.
Here I had a few more tests including a hearing test which indicated I did not have hearing loss. This was unusual for this disease but they were still leaning towards that as my diagnosis. I was given more information about restricting my diet, as well as two prescriptions. In general people with this sort of problem really need to monitor their fluid intake, keeping it as low as they can. The same is true for sodium. These two things work together causing excessive fluid retention in the inner ear. Also, sodium is more than just "salt". Sodium is also in baking soda, (i.e., bread products), & many preservatives, even toothpaste & tap water contain sodium fluoride. For most people, this means a complete lifestyle change. Giving up most eating out, & in fact most meals at home have to be mostly made from scratch and often with specialty high price brands. It could be an eyeopener for most people to check out the "sodium" on the labels on the back of most of their foods. This has become an everyday neccesity for me. Caffeine is considered a problem also, but I don't eat that many caffinated foods anyway & haven't found it to be a problem.
As for the prescriptions, I found that I had a difficult time with one of them, feeling dizzy & lightheaded most of the time. After consulting the ENT, I cut back & eventually discontinued it. The other medicine was valium, which did help with the disorientated feeling, but once again neither medicine really turned out to be preventative. In a short time my symptoms returned again. This doctor felt that if I didn't respond th the treatment he had tried, that I may not have Ménière's, & there was nothing else he could do for me. He suggested me to another doctor.
At the next doctor, we ran a few more tests & tried a new prescription. Here they ran a test which involved pouring hot & cold water into my ears. This brought on the symptoms but luckily was short lived & not to the point of vomiting. Although they said this was the definitive test for Ménière's, they felt there was not clear proof. However he still felt this was the only likely cause. However, after a while I once again began to get uncontrollably sick. At this point my daily sodium intake was less than 40% of the USRDA but it was still not enough. To give you an idea of how much that is, it is about the same as a Big Mac from McDonald's® or less than a 6" Turkey Breast from Subway®. (You can click here for nutrition information from McDonald's® or here for Subway®.) That's it. Less than a meal for most people, no chips, no fries, no soda, just a sandwich, more salt than I usually have in a day, still made me sick. Unfortunately my newest doctor also felt he had reached the limits of what he could do for me & even though there was not solid visible evidence of Ménière's, suggested I make an appointment for a surgical consult.
Well, surgery was not good news. One surgery is particularly destructive, going in & slicing up the part of the ear that causes the problem. That particular surgery results in total permanent hearing loss. There have been some cases where people have been deaf but not cured, unable to hear anything but the ringing in their ears. So it wasn't something I looked forward to but I didn't know what else to do, nothing else was working.
At this point I was involved in a very lucky set of circumstances, which I believe is a direct result of God's intervention. There were two Doctors in the city whom I could consult with. I called the one reccomended by my last doctor, at KU Medical Center. Because he had a heavy caseload & limited schedule, it would be around two months before I could get in to see him. At this point I was back to being sick several times a week. We knew it would be an incredible hardship. So we called the other doctor. At this point it was going on two years into the disease and my third specialist.
The other doctor scheduled an MRI and then saw me. The MRI still didn't show anything abnormal, still there is no positive physical evidence of my problem. Another thing that has caused confusion for most of the doctors is that my symptoms are fairly bilateral. Most people, at least in the beginning, are unilateral in there symptoms; diagnosis & treatment is much easier. But he still felt sure that my problem was Endolymphatic Hydrops.
It turned out this doctor was researching some new theories in the treatment of the disease. It also turned out he was a quite well known & accomplished doctor. He has invented a surgery that can enable some children and adults to hear who were born deaf, & opened a clinic here in Kansas City to help children with hearing problems. He even told me when he was looking at my MRI that there is a particular cell in my brain named after him.
I plan on writing the doctor for permission to discuss more details about my treatment & his practice so it may be of help to others out there. In the meantime if you or someone you know are effected by this problem and you want more information you may e-mail me and I will try to put you in touch with him. But basically, he put me on two new drugs with the intent of increasing my circulation and vascular dilation as he feels this is the key to the disease, pushing the fluid continually through the problem area. Both drugs normally are used for other things than this but he found that they worked perfectly together for the results we needed.
I stayed on this regimen for about three months, getting my body back in order. From that point on I have kept up the other part of my prescription, which is bascially very large doses of over-the-counter antioxident vitamins. I take these daily, and on this program I have had maybe only a couple attacks since starting about a year and a half ago. I highly reccomend consulting your physician about this program if you suffer from Ménière's. While by nature there is no such thing as a typical Ménière's patient, my doctor has still experienced extremely high success with this formula and helped many desperate people go back to normal lives. When I first came to see him I was having at least weekly episodes and from starting this regimen have been close to episode free. As I mentioned before if you are interested in learning more, just send me an e-mail. e-mail me
Thank you for your patience with me as I continued to update this part of the site with more information and with links to Ménière's information.