It seems strange to me that I have gotten more useful information off these boards than I have from the "paid Professionals." I am amazed that some quirky thing in a person's ear can cause a whole cascade of health problems (i.e. anxiety, difficulty concentrating and now GERD with me thanks to that lovely throwing up after ENG/caloric test, why don't they tell you this stuff?)and they STILL don't have a definitive answer for me...WHAT IS IT? But here's the million dollar question; even if they do come up with a diagnosis, bless their hearts, is there really anything that can be done if this is a chronic thing? I'm pretty new at this (4-5 months) and I'm sure some of you have been fed up with DRs. Thanks for letting me blow off steam.

I totally agree with you...I have been given more information and support from these boards..than any of the useless ENT's I've seen.

For example: a few people suggested a referral to a neurotologist and they even gave me the name of the consultant...so now thats what I'm aiming for.

Everyone here has been a big help...more help than any doctor right now.

ASLme - I hope things get sorted out soon.

Kelly

I was into my symptoms for a few YEARS before I found this board. I went through the initial hell and horror, feeling completely alone. I had the loving support of my family, but I didn't know anyone who even experienced 1/3 of the bizarre symptoms that I was dealing with. It was so awful and so scary.

And then one day I found this website, and people KNEW what I was talking about when I told them bizarre symptoms of wearing a ponytail threw me off, and they understood what it felt like to walk on marshmellows.....what a relief.

Sometimes I just jump on here to read, when I am feeling overwhelmed with my head symptoms. Such a good feeling.

PS - Another good reference point for having your symptoms checked is a neurologist. They also deal with disequlibrium issues and look at symptoms from a different perspective than another specialist would.

xo

Thats exactly how I felt. I never thought in a million years that other people would have 'Marshmallow feet' or feeling like they were sinking into the ground.

This board has made me a little bit more hopeful.

Kelly

Ha ha, I never even knew how to describe marshmellow feet, until I came on here! It's much easier to deal with this knowing that we are not alone, even if we are so far apart and pretty much anonymous. xo

I didn't know it was Marshmallow feet or Trampoline walk either. I'm glad I can finally put a name to it.

Kelly

I want off this ride sooooooo bad. This is the hardest thing I have ever dealt with, and I feel as though I've had some pretty big challenges. Mentally, physically and emotionally you feel a wreck (Hello that's you, most of you). And the Dr's they take their sweet time. Thank goodness for this board, thanks goodness for people that have been there to listen and help.

Friends are great so are family but I can hear in their voice and see in their eyes they don't understand the degree and depth that this makes you feel like a mess. They can't stop seeing you are who you were and you're trying to remember who you were. Sometimes when I feel ok, I feel Like I've been in a comma and am coming out and have to figure out what has been going on and other moments I am back in the tunnel, weird mental/emotional sensation, anyone else get that??????????????

I have been trying to ask myself what I am learning from this. What the point is if there is one.. People always tell you you'll get threw and you'll be stronger and they are right. But my fiend said to me yesterday and it really struck me...First the Healing then the understanding.....

Thanks to All for hope and understanding :)
Jade :angel:

Hi all - yes pls let me off this ride too! It has certainly been the worst ride in my life. jade - I know what you mean about learning something from all this - I do believe I have - the value of friendship for one, the meaning of life and value of it, value of health and I also think I will change (become wiser?) when I get through this - I may even change my career and most certainly my outlook on life. Whatever doesnt break us, makes us - I firmly believe that.

Oh and this baord is my saviour too - I found it v v early on into this - 2 years ago now - and it kept me going for months (and still does).

xxx

I want to get off tooooo. I'm thoroughly fed up of it now - facing my fifth ill Christmas in a row.I'm not sure where I'd be without this board - wish I'd found it at the start, although I don't know if it even existed back then!
Ann

I want sooooooooooo much to get off this ride too!!!!! At this point I think I would consider it a miracle!!! I fantasize so much about having a healthy life. I know we learn a great deal from "our suffering", but I hope I can get to the other side of this so I can appreciate "this lesson of life" better.

This board has been a lifeline for me. :) Thank you!

I'm with you! For my daughter's sake! I love the "million dollar question" - How true it is! I'm so tired of paying co-pays and doctors acting like your irrational because your simply "tired" of everything!

It's just crazy! It's so good knowing I'm NOT alone!

Sarena

:bouncing:

Yes, I too want off this ride - its now been almost 6 and a half years for me and Im no further forward than when this all started, in fact Im much worse now. Im just thankful that Im not on my own with this, not that I want any of you to have this but it does make it more bearable. My Christmas wish is that we can all, at some point get off this ride for good!!

Chris

Chris.. I join you in that wish for christamas too :angel: !!!

RE the trampoline walk and marshmallow feet.. what a great way of putting it, especially the marshmallow feet. I get that always!!! I used to think i was the only person that got that. I sometimes also feel as if my feet are sinking into the ground. These are quite bizzare feelings to say the least! I got my husband new slippers which were quite padded in the sole, and he commented that they felt funny to walk in. he said he bounced. I said "try living like that every day" lol. Oh the joys.

Hopefully one day we will all be free :bouncing:

Lyn xx

I got off the ride. I don't see doctors. They terrify me to death. All medical personnel, including nurses, techs, etc. terrify me. And they never did diagnose my ear problems. One finally gave me nasal cortisone, which cleared up the symptoms, but not the disease. Know what it was? Food allergies. I don't eat those foods anymore; I don't have ear problems anymore. All diagnosed by little ol' uneducated me. Very scary to find out after all those medications & shots & things that I'm smarter than your average doctor. Hah.