scary internet

Well, nice to see my old therad bumped! Joy, to your questions (and bear in mind that not only am I not a doctor, I don't even own a white coat )

1) Meniere's is "forever" in the sense that there is no cure. However, many, many people experience remissions that last for months and even years. So you may have MM in 2007 and then not feel you have it until 2012. During remission the disease is latent and you will have very few or no symptms at all.

2) It is a progressive disease. Most people experience progressively worse hearing loss. Conversly, for many people vertigo gets better. So, paradoxically, the worst symptoms will improve but your hearing will inevitably slide.

3) Not if you have vestibular symptoms only! Some people have vertigo, fullness and perhaps tinnitus but no loss of hearing (some doctors dx this as "vestibular hydrops") Some other docs believe that eventually all MM patients will develop all the symptoms but I believe there are people here whose hearing is minimally affected.

George

 

1. There is no known cause and no cure.

2. Progression varies by person. In my case, the only thing that got worse was hearing loss.

3. If you have repeated vertigo attacks for several years, the outcome is likely hearing loss. However, technology can help and very few go completely deaf.

I have had several vertigo remissions, the latest since 2003, but my hearing loss is now in the profound range. I also have 24/7 tinnitus and occasional fullness/pressure.

 

Thanks, Dr. George oh, and 'bumping a thread' - did I misbehave here? I'm embarrassingly new to this forum-talking stuff.

 

Bumping means moving it to the top.

 

I agree 100% with dizzjo (as usual) and with Linda. Why worry about something that you can't control. The day I accepted reality that "I have a disease that there is no cure for and it will eventually cause me to become deaf", was the day that I never feared this thing again. I have met many of you out there with Meniere's but I haven't met anyone yet whose hearing loss has been as profound as mine. My right ear doesn't cause me to get dizzy anymore but it is a totally useless ear which a hearing aid can't help. I still get dizzy in my left ear up to 30+ times a month, in which case I am living on Valium. Even still, I am very happy with my life and I am living my life to the fullest extent that the Meniere's will let me.

Piggy

 

A good thread...I missed it before. I agree with Annegina. The first info I got terrified me. I would have been better wtihout it. I have many medical issues and also take them in stride....I do look on the bright side. But most menieres info is very discouraging. I read one site that listed it as the worst medical condition to live with. I don't agree with that, but that is not comforting to a newbie. I would truly have been better off not reading the info at first. I have done a lot of research and I am so glad for that also, but, it's definitely a double edged sword. As Annegina said, my husband told me to just stop reading, and to just listen to my doc. For me, because I have a great doc, that was good advice. Lisa

 

That sounds really good in theory but difficult to put in practice if you're a neurotic wreck (official diagnosis ) like myself. I fly across the country holding my breath for five hours - and holding the plane up by the sheer power of my will. I know perfectly well that I shouldn't worry about something I can't control (like crashing down to earth in a billion smithereens) but this knowledge doesn't stop me from worrying.

Similarly, the only medical condition in the Merck manual I haven't had yet is extrauterine pregnancy. So when I surf the net for possible MM symptoms I haven't had yet, it's all pretty scary stuff.

George

 

Bottom line:

The internet is great for many uses but is SUCKS when it comes to medical and health issues because, in most cases, it creates a fear, paranoia, and self-diagnosis as described in George's messages.

However, that being said, the pharmaceutical companies must love the internet because millions of people around the world, who in most cases are experiencing slight discomforts, are flocking to their doctors demanding that they are prescribed a drug that they believe will help rid them of the condition they have self-diagnosed themself with after visiting sites such as this one.

Sad stuff indeed.....

 

Joyce - the web like for Washington University - for MM - Dr. Richard Chole - Chairman - is my physician - how cool is that

 

bravo

 

exactly

 

I was diagnosed with MM a few months before I ever saw a site. It was summer and I had lots going on, my symptoms weren't bad and I guess it really hadn't sunk in.
My doc who is a very good one, diagnosed me and laid things out for me. He said one thing that stuck with me 'one thing you can be sure about with MM is
that you can't be sure'. He's an otoneurologist pretty up there in his field.
I first found a tinnitus site which I seldom go to anymore because people are ready to do away with themselves over their noise. I dont need that so I dont go there.
When I found this site I was just coming to grips with things and it was a huge blessing for me. Not as much for the info--but for the support, for the way everyone reaches out--the empathy and the laughter. Some on this site have prayed for me and PM ed me in my hour of need!!! Wonderful! We all take turns--
when I can I'll jump in with a word of support, when I need support I get it immediately.
Try thinking in terms of things you absolutely can control--your attitude and your will to fight to find your normal. My pyschologist said, " if you think about negative outcomes of your MM for one hour a day you have to give the positive
equal play, because you told me this disease can go either way"
If you come here, you will find people who know what you are going thru and support you with all they've got, whether it be prayer, or info they've found, or a joke, or a shared experience. That's been a sure thing for me since I've come here.
God may or may not fix your ears but He'll hold you up through whatever!!
I am sure about that one, speaking for me.
Hang in there!!! Keep that glass half full!!

Carol

 

George,

If the plane is going to crash what can you do about it? Worrying about things like that is just causing yourself a lot of grief. Hopefully someday you can have better control of your mind and loosen up a bit.

Piggy

 

Of course I can do nothing about it! Stopping worry - in people such as myself - is not a matter of a conscious decision. That's my whole point!! Telling an anxious person to stop being anxious or a worried person to stop worrying is like telling a diabetic to stop having high sugar levels. It achieves nothing.

Not trying to be confrontational - just explaining the reality of the situation. For the record: I do fly quite a lot (or did until my ear problems kicked in. Now I avoid it because of airport noise and other issues)

George

 

George--
What I want to know is--if the only disease you havent had from the Merck
Manual is EXTRAuterine pregnancy--were you able to achieve intrauterine--
are you holding out on us????

Carol

 

This fellow in my church has had it for 40+ years and gets along like a normal person. Still carries dramamine, in case of an attack. So there's one positive example for you.

 

This is more of an "aside," but I sure think I know where George is coming from.

I am SO phobic of flying (unlike George/I can't even stand AIRPORTS) that years ago I sent away for "Fearless Fliers," a program for phobic flyers from United Airlines I think. When the envelope arrived in my mailbox I had an immediate and debilitating panic attack. It was all I could do to bring the unopened envelope to my therapist and ask her to lock it in her drawer! I'm also "convinced" that if I ever went to California "THE BIG ONE" would hit. Where these things come from I do not know, but that's why, after freaking out about acoustic neuromas I VOWED I would not Google another medical condition, and so far I've stuck to that.

I think I am truly one of the most neurotic people on the planet. Woody Allen made a lucrative career out of it, and I have overcome a great many of my neurotic behaviors-- but telling me not to get upset about something I'm upset about really is like telling a diabetic not to have high blood sugar levels. But I am SO much better than I was 25 years ago!

I'm also very "impressionable." John uses this to his advantage. He'll say "Chinese Food" on a Thursday, and by Friday I'm craving it. Little does he know, I could eat it 3x/day.

 

hehehe, no haven't achieved it - YET!!

George

 

Thanks. And I noticed you're doing those bioflavs, lysine, msm ... how's that been working for you?

 

The internet opens up huge potential. But like anything, we tend to find what we look for. I rarely dwell on the scary stuff.