Wednesday, September 29, 2010

Attenuators and meniere’s disease

Noise has always been a problem for me, especially since I became diagnosis with Meniere’s disease. About a month ago I wrote how loud noises were giving me problems even though I am almost deaf in my bad (left) ear. I received an email the other day from Elly who also has problems with loud noises; she also wrote how she handles them.

Here is the email…

Hi, I find loud or tinny noises unbearable. I used to wear ear plugs all the time, especially when handling cutlery, being near my toddler, people talking (even at a normal volume). The distortion is horrible otherwise.

Now I have had an attenuator made for my left ear. It cuts out the top 15 decibels but leaves me with clarity across the spectrum. I can definitely recommend getting one - it cost me £100. Funnily enough, it was the first time they had made just one for someone. Usually they are bought by musicians/drummers who want a pair.
Fortunately I don't wear hearing aids - I'm not sure if they can incorporate an attenuator effect into a hearing aid?

Simply, an attenuator is a device used to reduce sound and like Elly said musicians are primarily the ones that buy them. If you have problems with loud sounds you might want to look into buying a pair.

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Sunday, September 26, 2010

Meniere's Disease and Urea Crystals

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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Wednesday, September 22, 2010

An Artificial Inner Ear and Meniere’s disease

In the past I have written about the exciting work of Dr. Santina and his vestibular prosthesis. I had read a few articles on it but I really didn’t understand how the device would work. Well, if you have read the past two posts I have received many emails about an article in Popular Science, the September issue, which has a write up in their Human 2.0 section. I am very thankful for everyone that brought the article to my attention because it is written in a way that I can even understand it!

Highlights from the article 
  1. 4.5 million people suffer from some sort of balance disorder. Of course not all of them have Meniere’s but that is a large number of people. 
  2. The article explains why we become dizzy in layman’s terms “when you move your head, fluid in 3 inner ear canals swish around, bending the hair like cells that line the canals. The cells tell your brain which way they are flexing, which the brain uses to determine the direction you moved. Your brain then prevents you from getting dizzy and falling over, by, say, keeping your eyes focused straight ahead while you are jogging.” 
  3. The problem lies when the hair like cells are damaged by antibiotics (gentamicin), aging and injuries. 
  4. Dr. Santina’s prosthesis is worn on the outer side of the ear. It interprets head motion and sends electrical signals to the brain.  
  5. Dr. Santina is trying to reduce the size of the device by 20 percent so it can fit under the skin. 
  6. He has been working with chinchillas and monkeys during the experimentation. The results have been good. 
  7. He wants to start clinical trials in 2013. 
  8. Volunteers are already lining up to be in the trials (I don’t doubt that in the least!)


I have to say this sound really good. But devices, like medication takes time to get approved, so let’s hope that everything goes well and this will bring relief to those with balance disorders and Meniere’s disease.

If you get a chance try to find a copy of this article.



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Sunday, September 19, 2010

Wasted time and meniere's disease

I have been on disability for about 4 months now and it looks like I wouldn’t be going back to work any time soon. In fact I am considering long term disability through a program that my company offers. I’m not happy about this but there doesn’t seem to be any alternatives right now. What do I do while I’m at home? Not much because it seems every time I try to do something I become dizzy or have an attack. There is a lot of wasted time with Meniere’s disease.

It seems that I could be using my time more productively while I am at home but the attacks seem to stop me in my tracks when ever I start something. Even things like surfing the net can bring on an attack so I have to limit the amount of time that I am on the computer. I used to love to read but after just a few minutes my head begins to swim and I have put the book down.

Time management is important to everyone especially those with illnesses like Meniere’s disease. I have trying to set goals for my self so I can at least accomplish a few things every day. It is important for me and my emotional well being to feel that I am still be productive.

Before I end the post I just want to say thanks for all the great responses from the post  Meniere’s disease, sacrifices and understanding. I really appreciate it.

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Wednesday, September 15, 2010

Meniere’s disease, sacrifices and understanding

Meniere’s disease as I have written about many times has changed my life (mostly for the worse). It is hard to rank which is the worse change in my life, going on disability, which is a big one or being at home and not working. This hasn’t been good for our finances and it can be bad for your psyche if you let it. I try to stay as busy as I can and I also try to stay as positive as I can. There are other sacrifices that have been forced on me too.

My relationship with my young son is good but it is difficult for him to understand why I can’t be as active doing things as other fathers are. He knows that I get dizzy very easy but he often wonders why I have this problem. I wonder too.

I have been lucky that my wife has been very understanding through out this whole nightmare. She has certainly had to do a lot more work because of the things that I can’t do. Its rough on her but she always keeps a good spirit about her. I am a lucky man.

But through all the sacrifices and bad times there has been something good that has occurred. I have a better understanding and appreciation of people who go through life with serious health problems and how it affects them. It is admirable to see folks take such a heroic stance against some of the worse illnesses possible.

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Sunday, September 12, 2010

Meniere’s disease and perilymph fistula

Since my balance has been such a problem lately I have been researching balance disorders like the one I just posted about last week, Mal-de-Debarquement syndrome. Besides Meniere’s disease and vertigo there are other balance disorders like perilymph fistula. I had to look through my old posts to see if I had written about it before (I hadn’t) but I believe that some folks may have written about it in their comments.

According to the National Institute on Deafness and other Communication Disorders perilymph fistula is “Perilymph fistula is a leakage of inner ear fluid into the middle ear. It can occur after a head injury, drastic changes in atmospheric pressure (such as when scuba diving), physical exertion, ear surgery, or chronic ear infections. Its most notable symptom, besides dizziness and nausea, is unsteadiness when walking or standing that increases with activity and decreases with rest. Some babies may be born with perilymph fistula, usually in association with hearing loss that is present at birth. “

The symptoms of perilymph fistula sound a lot like Meniere’s disease with vomiting, vertigo and dizziness. Unlike Meniere’s disease simple bed rest is the first suggested remedy and if that isn’t successful then there are surgeries that can correct this disorder.

It is interesting to me that a head injury could cause it although I don’t think that my injury was severe enough to cause a tear in the inner ear. The following is from an article in emedicine.comwhich is interesting because it seems to make the point that meniere’s and Perilymphatic fistula are sometimes hard to differentiate. At least that is how I read it.

Here is the excerpt…


Perilymphatic fistula (PLF) occurs when perilymph leaks from the Perilymphatic spaces of the bony labyrinth into the middle ear space. The loss of perilymph alters the balance between perilymph and endolymph within the membranous labyrinth. PLF is thus a form of inner ear fluid imbalance. Meniere’s disease, another form of inner ear fluid imbalance, occurs when endolymph is present in overabundance. Both disease entities alter the endolymph-to-perilymph ratio in the same direction, which may account for the difficulty involved with separating their clinical presentations.

It is interesting to me that a head injury could cause it although I don’t think that my injury was severe enough to cause a tear in the inner ear. My next doctor’s appointment I will ask him about it.

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Wednesday, September 8, 2010

Sugar and Meniere’s disease

I thought that being on disability would be the perfect time to try to lose some weight. I would be at home and I could monitor my meals and between meals snacks. Unfortunately it hasn’t worked out like that. I don’t think that I have gained any weight (maybe a little) and I certainly haven’t lost any. I am wondering if the intake of foods with a lot of sugar in them (ice cream, candy bars, pies you get the idea) have made my meniere’s any worse.

At times it seems that I blame everything for having a meniere’s attack. Of course in a lot of cases it’s true because there are so many things that cause you to have an attack. Stress is a big one of mine and of a lot of other people that this disorder. Too much salt is another although not so much for me. Alcohol isn’t a good idea because you don’t want to have an attack if you have been drinking and feel a little woozy. But I really think that sugar has an adverse effect on me. Last Christmas I wrote a post about the holidays and Meniere’s disease. With all the food that is available on Christmas and Thanksgiving, especially the desserts, it’s difficult to resist having your fill of them.

Well, I am going to try to cut back on the junk food. I don’t know how successful I’ll be but I’ll try anything to avoid a Meniere’s disease attack.

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Sunday, September 5, 2010

Mal de Debarquement Syndrome and meniere’s disease

Years ago my wife and I were talking to a couple that had been on a cruise earlier in the year. They said that enjoyed the cruise but they wouldn’t ever go back. The lady told us that after she got off the boat she found that her balance was terrible as if she was still feeling the rocking sensation of being on the water. At that time I hadn’t begun my own journey with meniere’s disease and I thought that was awfully strange. But now I know that there is indeed a name for this, Mal de Debarquement Syndrome.

This syndrome is considered very rare although it might be because not every one who has it for a short period of time reports it. And the time that you can have it varies from days to months to even years. As for what causes it, like meniere’s, the cause is generally unknown. It could be the vestibular system sending the wrong signals to the brain. I guess the reason that most people don’t get this syndrome is because their bodies adjust to the motion of the boat, in other words “get their sea legs.”

Like meniere’s disease there isn’t a cure for Mal de Debarquement Syndrome, although unlike meniere’s disease it seems that there is a better chance of it going away on its own.

For more information about Mal de Debarquement Syndrome go to MDDS Organization which really covers the subject well.

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Wednesday, September 1, 2010

Meniere’s disease and mucinex

 Something that always makes me wonder about Meniere’s disease is what medicine helps and what doesn’t. A couple of months ago I wrote about being perplexed on what medications work and how some meds work for some folks and others not at all. Even some meds like Betaserc are controversial in that it is recommended in some countries and not at all in the USA.

One reader mentioned a common over the counter drug, mucinex, as being helpful with her meniere’s. Here is a comment from Sherry.

I am so sorry about your drop attack, I cannot imagine how I would feel after a drop attack, I feel so out of control with the other attacks. One of my biggest fears is a drop attack, because when they say meniere's can't kill you, it could with a drop attack, according to where you happen to fall. I hope this will be your only one. I am still having great success with the Mucinex. I am going to put off the more severe treatments as long as I can. Sometimes I wonder if the more treatments we take if it doesn't make it worse? Take care, I hope this gets better soon.

Thanks Sherry.
I searched on the internet about mucinex and I did find a few references to mucinex and Meniere’s disease. It seems that the mucinex helps to open up the Eustachian tube which relieves pressure in the ear. Mucinex is primarily used to open out airways and loosen mucus. For more information about mucinex and possible side effects go to this government site.

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