I am always interested to hear about the various types of medications and supplements that meniere’s sufferers are prescribed and used. I received an email the other day from Fozzer who wrote about something called urea crystals.
Here is the email…
I have had MD for quite some time and I have been in and out of remission, i think I am at second stage. i was not told about serc from any specialist or GP in Australia i found out from a chemist who asked why i was not taking it. The reason was I was prescribed Urea crystals a diuretic and a low salt diet. I was taking a massive amount of Urea it was effective but i felt it had a rebound effect, like a few other things i had tried and it did the same thing. Just recently I have been unwell again with the dizzy's and have tried to take valium and antihistamine which seems to work for the ringing /Tinnitus but still getting the vertigo so now i am just about to go back onto the serc as it seemed to work for me the last time around.
I did a quick search on urea crystals and found a webpage that discusses the connection between the two. It seems that urea crystals are a osmotic diuretic which inhibits reabsorption of water and sodium (I got that from Wikipedia). So it apparently helps reduce endolymphatic Hydrops. For more information about Urea crystals go to the following website.
**Just a quick note about the last post, someone sent me Dr. Santina’s email and I will be writing to him shortly**
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Sunday, September 26, 2010
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7 comments:
David:
my trouble with the disease is that all these different diuretics, vitamins and supplements only put off the inevitable. For me it seems the disease is highly variable, Especially if it is virus related. They work for a week or maybe even a month or two and than bam, the beast strikes again. All these are are band aids. I am more interested in seeing where the technology you talked about in your last post takes us. That is the future whether it is 3,5 or 10 years away.
Good blog
Heath
Hi!
I´ve tried Urea, called Carbamide, here in Sweden. When I read the website about the Urea I find that I maybe took it with too much water or maybe too late. It never made any difference and it´s rather expensive. Another "problem" was that I never felt good about carrying around small plastic bags with white crystals. :)
I also agree with Heath´s comment - it´s very difficult to know what "band aid" that really works in the long run. Something that works one week doesn´t work the next. And you never know why.
I wonder about Menières and deafness. How common is it that it will lead to deafness? I was told that it doesn´t at all, but now I´ve met a few people who have lost their hearing totally. I want to know what I maybe have to face in the future.
Susanna
David:
My personal perspective is that nothing can stop the progression of MM.
These vitamins and diuretics may hinder or slow it down for a few weeks or months, bit sooner or later MM will adapt, change course and strike. That has been my experience. You cannot control it, you can only hope to contain it, unless you want a laby; but I think people will reconsider those with all this research going on as discussed in your last post.
Paul
David:
i agree with he previous post that MM can take many different paths and can affect people differently. I hear Kristen Chenoweth has MM and she does 8 broadway shows a week, which I find hard to believe. I think many people with MM have been misdiagnosed and have MAV. I have tried everything under the and I just end up chasing my tail. It is a wicked disease and will stop at nothing to take your hearing and balance. Treatment are just band aides and deep down I feel outside of the destructive procedures doctors are just trying to buy time and put off the inevitible. It is progressive and gets
worse with time. The focus should be on vestibular prosthesis as medicines have failed us for over 100 years.
I think it would be interesting to pick Santinas's and Rubinstein's brain. They obviously have taken a different approach away from medicine.
Love you David for the blog. Stay strong.
Kathy
thanks everybody for the comments!
David
Recently diagnosed with possible Meniere's Disease, I am scheduled for a consultation with an ENT Specialist in the coming week. To date since the last attack (the first one in April, 2010), this last one really frightened me. It lasted for more than an entire day and I presented to the ER. There CT and MRI, and MRA scans were ordered for possible stroke. Fortunately, it was not a stroke but on following up with my internal medicine physician today, I found out that there is no known cure for such a debilitating condition as Meniere's Disease.
It is difficult to explain to someone how this condition affects you. Losing your balance, and the ringing and fullness in your ear can be really annoying. Even small amounts of air in my right ear nearly drives me crazy.
For those of you who have suffered from this debilitating condition far longer than myself, it is my hope that they find a more definitive remedy that will benefit you before total hearing loss.
I am glad that I found this site. It has been very helpful to know that I am not alone.
Hi,
I know when I first had a bad attack I thought that I was having a heart attack too. if you don't know about meniere's it can very frightening to have an attack. I hope that your ent can help you with the symptoms.
You are right there are plenty of us out there with this condition. hopefully there will be something coming along to help with menieres
thanks for writing and stay in touch and let us know how you are doing.
David
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