Wednesday, April 28, 2010

Update on my meniere’s disease as of April 2010

I thought that now would be a good time to give an update on my own battle with Meniere’s disease. With Meniere’s disease you are never cured you only have time off from the horrendous side effects. In the past few months I have missed work on occasion due to being lighted headed and feeling that an attack was coming on, but I haven’t had any of the big attacks like I had before the gent injections.

Although I did get a scare the other night while driving home, I looked down at the radio and when I looked up I felt that familiar feeling of an attack about to happen. I had enough control to pull over as soon as I could. I took an antivert and waited for awhile till I felt better then I drove home. That small incident made me very tired. I went to bed at 8 at night and didn’t get up till 6 the following morning, so even small attacks wear me out as they do others.

The pollen season as I wrote about earlier was particularly brutal this year; thank God it is almost over.

I am still taking the same medications and supplements every day. I only take the Phenergan and antivert when I am feeling lightheaded, the valium I take every day.

If things would happen to get worse, I am not quite sure what I would do. Even though the gent injections helped I don’t think that I would subject me self to another one. I believe that the first set of injections killed most of the balance in my ear so I don’t know why another one would help. As for surgery, I don’t think I would consider it, (at least for now).

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Sunday, April 25, 2010

Are Meniere’s disease patients empowered?

Meniere’s disease is a disorder with an identity problem. As we all know it really isn’t a disease, it is considered idiopathic which literally means “cause unknown”. And if you have read much about meniere’s then you know that the medical profession has a vast and varied opinion about its origin and how to control it. This can make for a very confusing time for those who suffer with it. But it also makes many meniere’s patients empowered.

Recently I received an e-mail for Christopher M. Schroeder of He let me know of a study that partnered with University of Virginia professor Jim Burroughs. The study and presentation was on Empowered patients. It presents some fascinating information about how some patients, about 30%, take an active part in researching their illness and working with their doctor on their treatment. These empowered patients are also more active in social media and the internet.

What really struck a chord with me was the fact that so many meniere’s patients are in fact empowered. They, we, are willing to take everything that the doctor says as gospel. We research, we ask questions and then we ask more questions. We generally are closed minded when it comes to alternate treatments.

It seems that we all should be grateful for the social media and the internet for giving us this incredible tool to reach out to other meniere’s patients and share stories and information. I think in the future that you will see a great increase in the number of empowered patients across the spectrum of illnesses and disorders.

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Wednesday, April 21, 2010

Another opinion about Betaserc and Meniere’s disease

Betaserc has been a hot topic with regards to Meniere’s disease. Here in the USA you can’t get it at a drug store (although one reader told me that it isn’t illegal but you have to get it “off label). It is not a FDA approved drug. However other places like Canada and many countries in Europe still prescribe it.

I wanted to share with you another doctor opinion on Betaserc. He has a unique perspective in that he has meniere’s and he is also a doctor.

This is from Eduardo Huertas…

I am a brain surgeon (practicing in Costa Rica) diagnosed with MD. After a major vertigo attack I was immediately started on Betaserc 16 mgs three times a day. I haven't experienced significant improvement, but I don't expect immediate results.

We don't fully understand MD. It cycles, (I was symptoms free for over a year without diet or medication) so it will be hard to know if I improve due to Betaserc or the natural behavior of the disease. I am still experiencing intense ear pressure and headaches. So far I have had 3 minor and 2 major vertigo crisis... last one has taken me a week to recover from, and I am not OK yet.

I doubt Betaserc will make a significant difference. Not because of the medication itself, but because of the underlying mechanism of MD. Nevertheless, because it is a H3 blocker (with no problematic side effects) I will continue on it.

I am yet to see a good double blind controlled study for Betaserc and MD... I would appreciate if anyone can direct me to it or them.

Dr. Huertas expresses the same concerns that a lot of us do. Is the medication helping or is it just the Meniere’s disease strange behavior taking place.

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Sunday, April 18, 2010

Do you ever try to forget about Meniere’s disease?

Do you ever try to forget about Meniere’s disease? I know that sounds crazy since this disorder seems to take over your life. Or does it? I have had heard from some folks who refuse to let the Meniere’s disease control their life. But can you really forget about it?

Today I decided that I was going to plant a few things in front of the house. I use to do a lot of yard work before the Meniere’s disease came along but now I rarely do. I can’t really gave a reason other than bending down seems to make me a little light headed. It took me about twenty minutes to finish planting the flowers. I was exhausted and surprise, surprise, I was light headed. But I shouldn’t be because meniere’s isn’t caused by head movement, vertigo is. Has meniere’s taken over my life so much that I fear doing even the littlest chores.

In my case, the thought of an attack is always in the back of my head. Even if I am enjoying the best day where I feel great and I’m steady on my feet, somehow that thought of an attack surfaces and I catch myself. I guess I just not want to be caught off guard. I have been surprised a few times while driving (before my gent injections started to work).

Fear seems to be a big part of this coping with this disorder.

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Wednesday, April 14, 2010

Meniere’s disease and taking medications

In my last post I wrote about how the pollen is affecting me and my meniere’s disease. Well the pollen is still here causing me to become dizzy and light headed. Consequently I have taken a lot of medications that has made me very lethargic. I have taken not only the Antivert but also the Phenergan, both are sedatives. I have also taken Benadryl, which makes me tired as well. All this has pretty much kept me in bed most of the time the past few days. I have also missed work.

I really have to wonder sometimes if I am taking too many medications especially if I am at home. After having Meniere’s disease for so many years I am not sure that some of these medications have lost their effectiveness on me. Especially with the Antivert, it seems lately if I am at home I will go for the Phenergan before the Antivert. Of course if I am at work I can’t take the Phenergan because it makes me really tired.

One reason that I am quick to take the medications is the memory of all the bad attacks that I have had. I get scared that I am about to have an attack and immediately go for the meds. As most of you know just the thought of having a bad attack can be frightening.

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Sunday, April 11, 2010

Meniere’s disease and pollen

If you live in the southeastern part of the United States you know that this is the time for pollen. Not just a little pollen like they used to have in my home state of Pennsylvania but major pollen so bad that the cars turn yellow with the stuff. And of course with the pollen comes a reaction to my meniere’s disease.

When I first moved to Atlanta in 1983 I didn’t realize that pollen was such a problem down here. That first April pollen that I saw really freaked me out! It looked like someone had painted my car yellow. Some one calmly told me that was normal for this time of the year. Atlanta like other Southern locations has a lot of pine trees and pine trees have a lot of pollen. The pollen season in the spring usually lasts for a couple of weeks.

The pollen really seems to have an effect on my eyes which in turn, I believe affects my vision. For me my visual stimulus is an important factor with my balance. An unsteady balance is a cause for concern with meniere’s sufferers. In the past week I have had some close encounters of the meniere’s kind where I thought that an attack was imminent, luckily it wasn’t.

I’m still taking my usual meds and supplements for meniere’s and I have been taking a benadryl at night. I have to be careful with the benadryl because it almost acts like a sleeping pill for me which is bad news if you have sleep apnea like I do. But the benadryl does seem to help and hopefully it will get me through this pollen season.

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Wednesday, April 7, 2010

Meniere’s disease and the web

I know that if you are reading this then you are probably comfortable with the internet or the web. Any problem or questions that you may have about Meniere’s disease or anything else can be easily looked up. The wealth of information that is right at our fingertips is amazing. And really it is a good thing because if I had meniere’s twenty years ago I wouldn’t have been able to find all the information that has been so valuable to me about Meniere’s disease.

I know that the library also has a lot of great resources about everything but the internet is different. Not only will you get the basic facts about meniere’s you can also read about how others are dealing with or not dealing with the disorder. I don’t know about you but before I started to have the symptoms of meniere’s I had never heard of it. As a matter of fact of all the people that I know only a few have heard about also. You rarely if ever see anything on the TV about it unless someone who is a celebrity has it then it might be mentioned.

The internet has really changed the way we think about things like illnesses. We no longer accept everything that is told to us from a doctor. We get second opinions. We have information and that is powerful. So keep reading and finding out as much as you can.

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Sunday, April 4, 2010

Meniere's disease and life challenges

Often I receive comments from folks that have had difficulties with Meniere’s disease and challenges in their lives at the same time. Denis is one of those people. He had to endure personal tragedy from deaths in his family only to now fight Meniere’s disease and all the vicious side effects that it produces.

Denis said...

Coping with Meniere’s is challenging. It does turn our world upside down. Life as we once knew it is no longer the same. I am not used to my new role. For years I enjoyed good health and my role was that of the caregiver both at home and at work.

I worked many years with chronic lung disease patients in pulmonary rehabilitation, telling them that they could learn to control their disease and not let it control them. Now the “shoe is on the other foot,” and I am attempting to practice what I preached. It is not easy by any means. Coping with vertigo, hearing loss, tinnitus, fatigue, “brain fog,” anxiety, depression, etc. is an entirely new adventure without the benefit of my usual maps. My Meniere’s associated regimens are continuously on trial, judged for their legitimacy or efficiency or both - the initial trust of my physician; control of my symptoms or the disease or both; symptom relief versus side effects, etc..

A cluster of recent, spontaneous, violent vertigo attacks have prompted me double down on my regimens, especially the low salt diet. I am working my way through the No-Salt, Lowest Sodium Cookbook by Donald Gazzaniga. As the author says, “The down and dirty truth is if you really want to lower your sodium intake (and you acknowledge that it is necessary and important to do so), you’re going to have to adapt your tastes and food desires to new flavors and textures.” I have not yet adapted and it is a struggle. Also, shopping for low-sodium or no-sodium food is an adventure in itself.

I do exercise by walking. I was never a runner or a swimmer. I have enjoyed hiking for years. There are multiple wooded trails along creeks nearby, where I can walk for miles without any awareness of the surrounding metropolitan area. The problem I now face, with spring and warmer weather approaching, is the fear of an attack on the trail away from home. I am hoping that I will stabilize so that I can go back to the trails. I recently bought a treadmill so that I can walk at home. Lately, there have been days when I just could not exercise. And days when I had to force myself to walk on the treadmill and felt better afterwards. I usually wear MBT “rockers” when walking, but when I am feeling wobbly on “off” days, they tend to exacerbate my balance problems.

I now have my hearing aid and am so pleased with it. What a difference it has made in my quality of life.

There have been a few discouraging times when I wondered if life is worth all the trouble that comes with Meniere’s. But I always remember my wife and son and what they went through with their illnesses. As Ralph Waldo Emerson once wrote, “What lies behind us and what lies before us are small matters compared to what lies within us.” I draw upon their courage in the face of adversity in my adventure with Meniere’s.

Thanks again Denis, I appreciate your comment and your courage dealing with Meniere’s disease.