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Have you ever heard of Meniere's Disease?? email this discussion to a friend?

myLot reputation of 93/100. SketcherD (382)1 year ago

I have because I have it. I hope the ribbon I have attached will upload correcly because I would love for more people to know about this disease. As it makes you have vertigo attacks that make you look like you are drunk in public. I want to make people aware of this disease.

An attack can come on with absolutely NO warning what so ever. I have had attacks last up to 8 and 11 hours. I have had daily attacks for 6 months now and I tell you I am getting fed up with it!!!

Not too many people have heard of it but I want to change that!!!

Now for the medical part: It is basically the imbalance of fluid in the ears. It's symptoms include constant loud tinnitus/ringing in the ears (like after you go to a concert), pressure in the ears (like going up on a plane), hearing loss that is not helped by hearing aids and finally vertigo which is like walking on a floating dock or the bed spins when you have too much alcohol to drink and then go to bed. There are other minor symptoms but these are the most bothersome.

My father's Mother has it and so does my Mom's cousin. I have been told it is not hereditary but this doesn't seem right to me.

Meniere's Disease is as prevelant as MS but just much more unheard of until now.

So have you heard of this disease?? If so how and who do you know that has it??


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tags:  meniere's disease, ribbon, vertigo, ringing in the ears, pressure in ears
 
1. myLot reputation of 96/100. patriciaqualls (4604)   1 year ago

I am so sorry you have this Disease. I have never heard of it until you posted it. I will see what I can do to make it more known around here. I wonder if I can make people do donations like they do for cancer. I think it should be known that people have this disease. I hope there will be a cure for it soon. It sounds like it would be hard to cope with rining in your ears and everything that goes along with that.
Take care,
I will see what I can do and hopefully there will be a cure.
Your friend,
Trish


myLot reputation of 93/100. SketcherD (382)  1 year ago

There is an organization called Vestibular Disorders Association that help's people with Meniere's Disease . It is a non-profit organization and it's website is www.vestibular.org. . In Canada and around the world there are many support groups.

Their main address is: 4035 Ne Sandy Blvd, Ste 207, Portland, OR 97212.

Thanks for your support. It is not a fun disease but well any day on the right side of the grass is a good one my Dad always says.


myLot reputation of 96/100. patriciaqualls (4604)  1 year ago

Thank you for posting the website.
I will definately take a look at it.

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2. myLot reputation of 96/100. ShellyB (3008)   ranked 12 out of 12 in meniere's disease   1 year ago

I am very sorry that you have this condition.
I have not heard of it but I am learning from reading your discussion.
I am wondering if you have to wear a medical bracelet I believe that should be helpful for you.


myLot reputation of 93/100. SketcherD (382)  1 year ago

Funny you would say that because I have often thought the same thing. But if it was on a medical bracelet would anyone have a clue what it meant if the found me on the ground and looked at the bracelet? I really doubt it. I have talked to many, many people in the medical profession that have NO clue what Meniere's Disease is. So would normal a normal person recognize it?

This is why I am starting a couple of discussions about this disease to raise awareness. If I can reach a few hundred people that would be great!!!! They may tell others and so on.

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3. martiansrule (1)   1 year ago

I also have menieres diesease, although not to the degree of severity that you do. My worst experiences with menieres came around 3 years ago. I had several vertigo attacks within about a month. I was in a job that was high stress, which was affecting the amount sleep I was getting at night. I was having to depend on alot of caffeine to stay awake. Also I was not paying attention to my diet. As you may already know that doctors have determined that caffeine, sodium, stress, alcohol and smoking are all contributors to making menieres worse.
There are many options that you may want to discuss with your doctor. One thing that I have had done is called a endolymphatic shunt. What it involves is surgically putting a shunt (a small tube with a valve on one end) into the cochlea. Before my surgery, I was having small attacks a couple of times a week, as well as declining low and high frequencies. After surgery I have not experienced these attacks once. The low frequencies came up 40 decibels in that ear as well. This is only one of 3 or 4 surgical options that are available. I hope that this info helps, and good luck.


myLot reputation of 93/100. SketcherD (382)  1 year ago

Thank you martiansrule. happy I have heard of these surgeries as well as the dietary solutions for helping Meniere's. The doctors have not as of yet entertained the idea of a shunt for me but perhaps in the future when the get around to completely diagnosing this disease the will. They are still arguing that it is not Meniere's and that is may be neurological.

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4. LUVSLIFEHI (1)   6 months ago

I developed Meniere's about 7 months ago. It was ruining my life. I could not go to work, I could not drive, and basically, could not function. I had lost complete hearing in my left ear. I am a pharmaceutical rep, and driving is a daily demand.

I was very fortunate to find an excellent ENT, in Colorado. He is young, aggressive, and very well educated. Surgery is a last resort for him. We tried the Decadron injections, which gave a little relief of the vertigo. I later developed an ear infection, and half of my tympanic membrane was gone.

The major issue was the vertigo, as far as being able to work and function. Dr. Chain and I, decided to do a tympanoplasty ( repair the ear drum ) and a endo lymphatic shunt to keep the fluid out of the inner ear. It has been five weeks since the surgery. I have had two Meniere's attack since then, and no vertigo. It has about 70% chance of success, but I was willing to take the chance. It was the right thing to do.

I have been in the medical field my whole adult life. This man is someone I would trust and know I never have to travel to Mayo, or other facility. He is very talented and cautious.
His name is Jeff Chain M.D. 303-798-1309. If it had not been for him, I would have been on disability.

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