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Inner Ear Disorders Message Board
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Old 08-24-2007, 01:31 PM   #1
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state808 HB User
Thumbs up Read this!



Just to let you know.....( because no one is going to tell you this). Coming to these kind of sites are NOT GOOD! Simply because.....you will never get an answer to your illness. Everyone here is grasping for answers to their OWN health issues, and don't give a fig about anyone elses. It's sad but true. I have been observing this site for awhile and if you want my opinion...don't come here anymore, you will only get MORE depressed, and feel hopeless about your situation. Trust me. Only doctors and specialists can help you. And that's where you get your answers from, not from people on the internet. And all these sites are the same, people come in here saying "oh the doctors are not helping me, and blah blah blah, and I feel no hope and blah blah blah, it's all NEGATIVE! And people comparing their illness to one another " Im dizzy" and the other person says "yeah me too". Or " I got headaches that are bad" then the other person says "yeah me too". LOL its NUTS! Who needs that? Where have you seen a health site that has people with SUCCESS STORIES??? NONE!
So I decided NOT to come to this site anymore! And If I were you I wouldn't either! I do expect this post to be deleted by someone. And probably my account...but I don't care Because I said what I had to. Which was the truth.

ALOHAAAAAAAAAAAAAAAAA!

Last edited by state808; 08-24-2007 at 01:40 PM.

 
Old 08-24-2007, 02:14 PM   #2
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alexiwildchild HB User
Re: Read this!

IN MY OPINION....i have to disagree that only doctors can help you....i've seen about 8 of them, and NOT one has helped me. sorry you don't feel like this site doesn't help you, but i think there are many of us who do. and as far as success stories....i obviously don't think you have been reading enough of the threads on this particular board...i have only been here for a short time, and i have read quite a few. this is a place for some of us where when no one else seems to relate to our symptoms/problems, we can come and vent and talk about it to people who do. sure, there are negative posts where we are having bad days, etc, but that is part of the deal.....we need to express it to others who have the same kind of days and symptoms. some people may be looking for answers on here and not get them, but at least those of us who are looking for support and understanding....we get it. hope you find a site that will be more beneficial for YOUR particular needs.

 
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Old 08-24-2007, 02:33 PM   #3
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Re: Read this!

First off, if this site doesn't meet your needs you don't need to return. But sharing you own negativity in the form of advice is not helpful for anyone.

About a year ago I decided to stop looking at this dizzy site and another one hat I would check regularly. I thought I would try to concept of "what you focus on grows" and therefore what you don't focus on doesn't grow. The whole like attracts like principle. During that time I didn't improve. The doctors had no advice for me. The PTs had no advice for me. There was no answer. But at least I tried it. And found out for ME it didn't help.

Then I returned and these are the things I gained:
1. Support that I'm not alone.
2. Knowing others with my diagnosis that have recovered or are in the process and knowing there is a light at the end of the tunnel
3. A PT who told me a new modification to the most important vestib rehab ex that I was never able to do properly- this opened the door to my progress with this
4. Advice on the vision component from another person who had that specific roadblock to recovery that I have- the docs all said "i don't know how that affect recovery"
5. Lots of food for thought on things that could be blocking my recovery- vision, MAV, allergies, sinus, etc.
6. Empowerment
7 More than I can think off the top of my head...

I think the people on this board have been FANTASTIC in giving constructive feedback. Yes, sometimes our posts are down. We are going through hell. For the most part I'm always learning.

Anyway, I couldn't let this post go without responding. Glad I got that out of my system!

Joni

 
Old 08-24-2007, 02:42 PM   #4
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sheriff56 HB User
Re: Read this!

My opinion is that you don't need an Inner Ear Disorder board , try posting on mental illnesses you will feel more at home there.

 
Old 08-24-2007, 02:42 PM   #5
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charlotte67 HB User
Re: Read this!

Why waste your time telling us that this site doesn't help you? Just move along.

Honestly, this site has given many of us hope, help, kindness, answers, and questions to ask our providers. Balance in Chicago has even been kind enough to pass along very helpful exercises.

As for you, you have offered nothing...

 
Old 08-24-2007, 03:28 PM   #6
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Jaxzilla HB User
Re: Read this!

Great posts ladies! Im behind you 100%! That was funny Jane, about the Mental Illness board, you had me in stitches!

All I have to say is that with an illness like this, we need each other.

Cathy

 
Old 08-24-2007, 05:52 PM   #7
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joy78 HB User
Re: Read this!

I think it's funny that someone would take the time to post that garbage. If you don't like the site then don't come back. When I found these boards I finally found a place where people could give me support and make me feel better when i felt so alone. That made all the difference in the world. Posting here isn't about finding a "cure" to our problems or even getting a diagnosis. None of us are doctors, but to be honest everyone here has helped me learn more about inner ear problems than doctors.

The point of these boards is to get support and advice. It's not about finding a cure to our problems. yes, someone can come on here and just obsess about their problems and it can be negative. but it's all about how you use this forum. If you use it with the determination to move on with your life and find support from people who have the same problems you do, then this is the place to come. I am feeling better and still like to pop in and let people know that there is a light at the end of the tunnel. That there is hope. I think it's important to hear that when dealing with this stuff. It's scary, and you defiantley feel all alone, especially when doctors don't even know what is wrong with you. Well that is my rant. I don't think the guy who wrote this post deserves a response, but I do want to write this for the people who are new to these boards, so they can realize the help they can really get from coming here.

 
Old 08-24-2007, 06:13 PM   #8
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studyin HB Userstudyin HB Userstudyin HB Userstudyin HB Userstudyin HB User
Re: Read this!

This is an interesting thread and I hope it's not deleted as this sort of discussion is probably needed for others who may not see the benefit of the board.

State808,

I feel very sorry for you that you have totally missed the boat on this. If all you have seen on this board is misery and complaining then either you haven't looked around hard enough for the gold nuggets or you are wearing some pretty heavy filters that only let through the posts where some of us here may be having a rough day and let it out. You have to USE your head and READ. Let's hope you at least looked at the archive and got something out of that.

Put simply, without this board I would not be anywhere near where I am now in understanding these inner ear hassles. There's a very good collection of brainy people here who will not leave a single stone unturned until this thing is solved. There are countless reviews of science articles and excellent info from the internet available here. Most of us have already eliminated the garbage info out there and only left the stuff that counts here on the board. How on earth have you missed that?

I do pity the person who relies only on what the GP (or ENT) knows - you may get lucky - but from my experience and from what I have seen here, the odds are definitely not good.

Scott

 
Old 08-24-2007, 07:32 PM   #9
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parenteau27 HB User
Re: Read this!

I attended a lecture this year with Doctors from back east specialist in a disease no one knows why you get it and no cure only control over the disease. At the end of the lecture he said it was up to each person to take over the care of his disease and to read up on everything they could, go on the internet, join a support group, and if they found something that worked to let them know because there was a lot that they didn't know about the disease. I think this is true with a lot of Doctors.

You have to cope with your physical problems, with mental fatigue and with a lack of understanding from your family, your friends, and the medical profession. This site helps us to realize the symptoms we have are normal with this disorder,it helps us cope with our problems.

 
Old 08-24-2007, 08:36 PM   #10
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missy7777 HB Usermissy7777 HB Usermissy7777 HB User
Re: Read this!

And lest us not forget, state808, that we also come here to help others - not just ourselves. One of the first things I think of/do when I discover something "new", or read something important, or see my doctor, is come here to these boards to see if maybe what I say can help someone else who is going through such turmoil. It's about helping people - try it! That in itself is a great healer.

 
Old 08-24-2007, 08:57 PM   #11
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tummy2 HB User
Re: Read this!

State,

Maybe your expectations are unreasonable.. Ofcourse people come here for their own illness... No one goes to a support group for fun, but thats where people chare their experiences. If you have been watching this board, then you would know... Success stories are all around if you know where to look.

 
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