Sunday, November 28, 2010

How has Meniere’s disease changed your life?

The easy answer is for the worse; it has made life a living hell where I am constantly worrying about having another attack. Not to mention, the psychological despair that this disorder puts you in. it also strains relationships and makes working difficult if not impossible. I could go on and on about the trouble that Meniere’s brings.

But have you learned anything about yourself?

In the beginning of this journey with Meniere’s disease, I was confused because I didn’t know anything about it. Like most people I hadn’t even heard about let alone known anyone with it. Once I started to research Meniere’s disease and talk to my doctors about it, I became really upset. No cure, some medicines helped some people, procedures might help and surgery could help but with a price. At that time things didn’t look promising because the devices that are now being tested were in there early stages. Not only was I upset but also depressed and stressed out. I didn’t know what to do.

In January 2009 right after I was on short term disability for the first time I decided to blog about predicament. This changed everything for me! Not only was I constantly researching the problem I was also connecting with others who also had Meniere’s disease. As many of you have told me in the comments section it is really helpful to find others who have to deal with this disorder.

While I still have problems with stress and disappointment, even depression, I know that I am much stronger now than I was in the beginning. And if other problems arise similar to Meniere’s disease I will definitely be able to handle them better because of what I have gone through.

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Wednesday, November 24, 2010

Update on my Meniere’s disease November 2010

This is a rather difficult time for me right now because my job has ended and I am waiting on the decision about the long term disability from that company that handles my former employee’s disability cases. I have also applied for Social Security Disability which usually takes a good deal of time to be settled. So while it is tough I do have hope especially with the device that has been developed Dr. Rubenstein of Washington University and the devices first patient, Gene Pugnetti. Even though it could be a while before this device has all the kinks worked out of it I am confident that it will be eventually successful. And don’t forget the device that Dr. Santana is working on.

Here are two good links about the new device...

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Sunday, November 21, 2010

The Balancing act of Meniere’s disease

As a young kid it used to be fun to spin around so many times that you became dizzy. It was a strange feeling at that time and fortunately it only lasted for a few moments. Rides at an amusement park I suppose would also through your balance off, of course I wouldn’t know because I was chicken to ride them. The spinning and dizzy sensation of our younger days only lasted a short while unlike the spinning and dizziness of Meniere’s disease that can last for hours (certainly without the thrills of an amusement ride!).

Balance can be an issue with a lot of folks especially when they get older. I used to think that it was a matter of fragile bones and lack of muscle strength but I read an article that states it has more to do with the brain then anything. Apparently there is a change in the white blood matter in the brain that causes a balance problem. In a study it also concluded that people with white blood matter changes also had more falls. Of course to combat balance problems there are also exercises that you can do which would be especially beneficial to senior citizens. As I had written about a few years ago I went to a Vestibular therapist to help me with my balance. Always check with your doctor before starting any exercise program.

In my own case my balance isn’t very good right now and I am very careful moving around or trying to move around too quickly. If I am not careful I might run my shoulder into a wall or even stumble over my feet. At times I have considered getting a cane but I don’t think I am quite ready for that but maybe someday. It isn’t a bad idea although I don’t think that it would help with a drop attack.

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Wednesday, November 17, 2010

Where’s my antivert?

Since I was diagnosed with Meniere’s disease I have tried quite a few medicines, but in the end I usually stick to just a few that I feel comfortable with. Some I take on a daily basis and some I take when needed. I have found over the past 6 years with Meniere’s that it is best to do what works for you.

One that I take religiously every morning before taking my son to school is antivert (meclizine) which is an antihistamine that controls the amount of histamine in your body and it also makes you sleepy. It is similar to the over the counter drug Dramamine which is taken for car sickness. Unfortunately this morning I couldn’t find my antivert and I started to panic (not good for meniere’s patients!) I took a valium instead, calmed down and drove my son to school without a problem.

I looked everywhere for the medicine while my son was at school but I couldn’t find it. I ended up taking another valium before I picked him up. Once again there wasn’t a problem but I was still worrying because antivert has become my safety net. The valium seemed to work but I just don’t have the confidence in it like I do with the antivert. Although I have read that antivert doesn’t prevent attacks where as valium might.

Well my wife found the medicine this evening and I was relieved. It seems silly now that I got so worked up over not finding my medication. But that is the life of a Meniere’s patient!

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Sunday, November 14, 2010

Your children and Meniere’s disease

A very common problem of Meniere’s disease patients is the lack of understanding that most folks have about this disorder. While it is getting a little more coverage in the press because of the recent developments regarding an inner ear device that hopefully will control vertigo, it is still difficult to for some people to understand what the sickness is all about. For some reason that can’t seem to see how Meniere’s disease limits your activities and how it plays havoc on your emotions. I have been lucky because my wife has seen firsthand what Meniere’s can do to a person physically and mentally. She is very supportive. I also have a 9 year old son who sometimes understands and sometimes he doesn’t. Children and Meniere’s disease can create a situation that must be carefully handled.

I have to admit that I sometimes get frustrated with my son when he wants me to do certain activities with him, like go on amusement rides, especially roller coasters. I wouldn’t even want to watch a roller coaster let alone ride one. But he still gets to go on the rides because his mother will go with. The same goes for water park rides, once again I can’t do that but my wife can. My son enjoys his mother’s company but I know that he wishes that I could do things like that with him, and I do to. He constantly asks me if “I wasn’t sick” would I go on the ride with him. I guess he sometimes wonders if it isn’t just my illness that holds back my participation. And that hurts.

With time my son will have a better understanding of what I am going through.

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Wednesday, November 10, 2010

Bad gent experience and Meniere’s disease

I have written a lot about my gentamicin experiences dealing with my Meniere’s disease over the past few years and I have received quite a few comments about how the shots affected other folks, some bad and some good. I received one from Peg the other day about her very difficult time after the shot.

Here is the comment…

Peg said...

I was diagnosed with MD about 2 years ago. I started having vertigo attacks about every other day in May. They would last from 2-18 hours. I opted for the gent shot in Oct. It was the low dose shot.

I was fine the day after the shot. Then on the third day everything went haywire. I don't remember anything for the next 3-4 days. My husband had to help me out of bed to get the bathroom. He said it was horrible to watch.

I then progressed to being able to walk around the house with some help. I can now walk around with no help but still stumble a good bit. When we go outside the house, I again cannot walk by myself.

My ENT told me the gentamicin did too much damage. HE said I have the symptoms of someone that the severed the vestibular nerve. It has been about a month and a half since the injection.

I go from feeling okay to I can't walk without help in the span of 5 hours. Not sure if this is normal and neither is my ENT.

He said he will not do any more gent shots. He does not think I will have any more attacks from the right ear.

I had already lost a good bit of hearing in this ear. THe gent shot did a little more damage to the hearing.

Dr is saying 3-6 months for recovery. I go back the beginning of Dec and we will then discuss Vestibular therapy. Right now I get way too sick with any head movements.

Driving has been out of the question since May. I was afraid of having an attack while driving and now I just can't move my head to drive properly.

This has to be one of the worst reactions of gentamicin injections that I have read about. I know that your balance is affected and your hearing can also be affected but what happened to Peg was really bad. I certainly hope that she recovers from this and that the Vestibular Therapy helps her out. Meniere’s can be hell to deal with

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Sunday, November 7, 2010

Does the new meniere’s implant help with tinnitus?

I know that we have talked a lot about the first implant to treat meniere’s disease and how wonderful it would be to end the spinning and throwing up not to mentions the emotional strain that it puts on us. But one question that I have heard more than one time is whether these new devices will have any effect on tinnitus, the ringing in the ears that often accompany meniere’s disease. Unfortunately I don’t have the answer to that question.

What is tinnitus?

According to the American Tinnitus Organization “ Tinnitus is the medical term for the perception of sound in one or both ears or in the head when no external sound is present. It is often referred to as "ringing in the ears," although some people hear hissing, roaring, whistling, chirping or clicking. Tinnitus can be intermittent or constant-with single or multiple tones-and its perceived volume can range from subtle to shattering. “

While it is common to find meniere’s patients with tinnitus there are also folks that have tinnitus without the meniere’s disease. Although like meniere’s there isn’t a cure.

But there are many treatments that you can try. For the full list go to the following ATA webpage.

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Wednesday, November 3, 2010

Hyperacusis and Meniere’s disease

Tinnitus is one of the common side effects of Meniere’s disease. The constant ringing or whatever sound that you hear can drive you crazy. The sound never lets up. You don’t have to have Meniere’s disease to have tinnitus. According to the American Tinnitus Association soldiers coming back from overseas have found this to be a common problem. Another hearing disorder that can be irritating is Hyperacusis.

What is Hyperacusis?

According to Wikipedia “Hyperacusis (also spelled hyperacousis) is a health condition characterized by an over-sensitivity to certain frequency ranges of sound (a collapsed tolerance to normal environmental sound). A person with severe Hyperacusis has difficulty tolerating everyday sounds, some of which may seem unpleasantly loud to that person but not to others.”

What causes Hyperacusis?

It can be caused by many thing such as head trauma, migranes and you guessed it, Meniere’s disease. For a complete listing go to It is not surprising that musicians develop this problem over the years with their exposure to loud sound. Stress and anxiety also can play a part in this hearing problem.

Although I don’t have the constant ringing of tinnitus I believe that I do some form of Hyperacusis. Loud sounds have always bothered me even before I was diagnosed with Meniere’s disease. And it seems that it is indeed a big problem for many other Meniere’s sufferers as well.

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