Dehydration and Meniere’s disease

Now that is almost summer time I thought that it would be a good idea to about staying hydrated especially during the hot weather. (I also received a comment about drinking water as well!). Personally this has always been a particular problem with me whether it is hot outside or not. I have never been much of a water drinker but drinking water and lots of it every day is a great idea.  The comment that I referred too also mentioned that it has helped some with their meniere’s disease as well.

Here is part of the comment…

I went off the medication after one week and tried to adapt. I have been a poor water drinker. Yesterday when I went for a round of golf (18 holes)I got severely dizzy as I went to tee no 11 and had to steady myself with a three iron. I discontinued the game. I took 2 quick bottles of coke zero because I was thirsty. Then two more bottles of water slowly. Suddenly I realized I was much less wobbly than usual up until now as I continue to drink more water than usual.

I don’t know if the coke zero helped any but it appears that the water was beneficial.  Of course if you are in the middle of a meniere’s’ attack water won’t help any because you probably wouldn’t be able to keep it down.

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The physical and emotional pain of Meniere’s disease

 

When you think about your Meniere's disease which problems seem to jump out at you, is it the trouble associated with vertigo and its aftermath or is it the emotional baggage that comes along with this disorder?  For me it was the vertigo and how terrible and helpless I felt not to mention how long it took to get over an attack.  The emotional aspect of it after a while made it even worse because I always was wondering when my next attack was going to be. Michelle sent me an email wondering if others were also experiencing physical pain such as ear aches as well as the emotional problems created by Meniere’s.

Here is part of Michele email…

In doing research on Meniere’s and the Methotrexate post on your blog I came across a renowned clinic which stated in its’ description of Meniere’s Disease and I quote, “ There is no physical pain associated with Meniere's Disease. However, there is considerable emotional pain when the disease is difficult to control, and the spells are unpredictable.”

Personally myself at times my ear(s) hurt! Barometric changes are especially painful for me, the pressure gets so intense my ear(s) ache just like when I was a young child and would have ear infections. While most of the other symptoms I can tolerate to a degree because I know they will eventually subside to a manageable point the ear pain is what I dread most. Ear pain combined with the other symptoms will wear me down faster than anything.

I was just curious if you or any of your other readers experience ear pain.

Thanks Michele

Like Michele I also had ear aches and infections while I was growing up.  Different things such as a change in weather or altitude would bring on the fullness in my ears and the pain.  But regarding the past several years that I have had meniere’s ear aches haven’t been a big problem.

 

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Is there a time limit on going bilateral with Meniere’s disease?

I have had Meniere’s disease since 2005. The problem has always been in my left ear, why my left ear? I’m not really sure but that is the ear that had to go through all the scrutiny and all of the gent injections. How did the doctor surmise that it was the ear where the problem was?  I can’t completely remember other than the fact that my hearing was terrible in my left ear and that I had problems when I was kid in that ear.  Over the years I have been told a few times that meniere’s is caused by a viral infection that I guess just happened to be in my left inner ear. Of course that doesn’t explain why it hasn’t gone into my right ear after so many years.  I don’t worry much about that happening but you never really know because there isn’t a time limit on the meniere’s going from one ear to the other.

I saw a few comments this week about going bilateral

Here is one from Peggy…

Yes, I was also told there was no way I would ever go bilateral because if you're going to go bilateral, it will happen very soon after the first side starts. What a crock.

It's now the thing I am most afraid of in my life, although I try not to think about it too much. Clearly, many people do go bilateral a VERY long time after the initial diagnosis on one side.

 

That definitely is scary because there doesn’t seem to be any explanation on how or why the meniere’s would go to the other ear whether it was shortly after being diagnosed or even after having the disorder for years.

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Certain tests for Meniere’s disease

I know in the past that we have talked about if there are any reliable tests to determine whether you have Meniere’s disease or something else. Unfortunately there isn’t any that will give you a definitive answer one way or the other. Mostly it is a doctor’s diagnosis from the basis of their examination and certain tests that might provide clues.

A recent email from Deb talks about her meniere’s experience and what tests she had.

I was diagnosed with Meniere's about 4 years ago after several attacks of vertigo. I was treated for several months for an inner ear infection before I got the diagnosis. I have had great success with Dyazide, 1500mg sodium diet and valium when I felt symptoms coming on. But I have had constant vertigo, balance issues, headache, and fatigue for the last 3 weeks. I have never had a spell last this long and it has me concerned. I recently had a MRI and it ruled out other issues, but I am wondering what kind of testing you have had. I have been doing some research and found the following test should be performed. Electroencephalogram (EEG)
Electronystagmography "ENG". There also another test called the Caloric
Transtympanic electrocochleography (ECOG Test)
Syphilis Mumps or other serious infections in the past Inflammations of the eye Auto-immune disorders or allergy or any ear surgery. I believe I had the ENG already done, but wondering if it is beneficial to have the other testing done. I am at my wits end at this point. It just scares me that I have done so well for so long and then have this go on for so long.

I had the ECOG test done a few years ago but I can’t remember whether I ever had the EEG done.  I also had the Dix - Hallpike test to rule out vertigo early on. I think that my own description of the attacks that I was having was probably was probably the biggest determination as to whether I had meniere’s or not.

As we all know Meniere’s disease has always been quite a mystery to those who have it and to those that treat it.

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Methotrexate and Meniere’s disease

 

 

Last week’s post received a lot of great comments that I certainly appreciate! In some of the comments I noticed a medicine that I don’t recall seeing before and that is methotrexate.

Here is part the comments from Peggy and anonymous …

 

“I'd be curious to know the rationale behind methotrexate for Meniere's. It's not a steroid as far as I know, and is usually used to treat diseases like cancer or rheumatism. What does it do to help with Meniere's?”

“Methotrexate is used to suppress the immune system in some cases of intractable bilateral Meniere’s when there has been a response to steroids. It has to be dosed slowly and blood work has to be monitored closely by a Rheumatologist. Although it can be a risky drug, oral steroid for long periods have all those nasty side effects, so they use methotrexate. I had never heard about it either until recently but you can Google the literature reviews.
The goal, is to do this as soon as possible, to capture the hearing before it goes down and maintain it as well as control all the other symptoms. This is the way it was explained to me.”

As most of you who have been dealing with meniere’s disease know doctors seem to prescribe various types of medication for this disorder some work and some don’t.

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What are your criteria for choosing a Meniere’s disease treatment?

While there aren’t a lot of options available for those with Meniere’s disease it certainly is important to consider which one is right for you. I know in the first couple of years that I had meniere’s I was really confused as to which treatment would be the best for me and from writing this blog and receiving all the comments from the past several years I know that it can be difficult for everyone in this situation.

I received an email this week asking me why so many folks have decided on having the laby surgery.  That is a really good question because this isn’t the easy type of surgery to go through plus the negatives of it can be rather high.  But there are some that have been satisfied with the results so that is important to consider as well.

In my own case I decided against any type of surgery opting for the gentamicin injections instead.  It is even difficult to say now years after the injections whether or not I am satisfied with the results. On the one hand I don’t have the terrible long attacks that I use to but my balance is a lot worse off and I don’t think that will change any time soon.

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Accident prone and Meniere’s disease

This past week Peggy sent me an email about how recent balance issues have resulted in her having a bad fall.

Here is part of the email…

For a long time I've known that having Meniere's, and now compromised balance since having the labyrinthectomy, have made me more clumsy and prone to tripping and falling than I was before. But last week I confirmed it the hard way. I fell on the stairs to our basement because I was in a hurry, and because my balance is just plain bad now and I have a very difficult time saving myself once I lose my balance in any direction. I ended up with a bad sprain to one ankle and am on crutches now.

I'm curious to know whether others think they are more accident-prone now than they were before they got Meniere's. I worry more and more that I will do myself a really serious injury some day because of the balance issues.

I can really relate to this! After all those gent injections my balance has taken a real hit. No matter where I am at or what I’m doing I ‘m always careful because of my shaky balance.  I have been lucky so far that I haven’t had any real bad spills. 

Let us know if you have become more accident prone after your treatments for Meniere's disease.

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