Hi I'm new

Hi Julie,

I'm a newbie here, too. Nice to meet you. I have milder symptoms than most here--tinnitus, but not all of the time and only in my right ear, fullness, dizziness. I couldn't really believe that my symptoms added up to Meniere's, and I ignored my ENT's advice to do the low sodium thing, and stopped taking the diuretic. Well, last Friday, I had my first vertigo atttack, and I can say that I NEVER want another one, so I went back to my ENT and on my low sodium. I still feel yucky, but the tinnitus has stopped for now. I found this site Monday.

As for it never easing, I am one of the fortunate few here that has a much easier time in the summer. As a matter of fact, I had NOTHING from May until three weeks ago. As soon as the weather changes, so does my ear.

I can tell you without hesitation that the folks here are very understanding, supportive, and love to help. AND, they are the best ENT's around. When I went to my ENT on Tuesday, I mentioned that, since I had quit playing guitar on our worship team at church and was no longer around loud speakers and music, my tinnitus wasn't as bad. He looked at me kind of strangely and said he didn't think loud noise or music would affect me. I felt kind of stupid. Well, low and behold, some of the people here tell me that noise affects them, too. So, I'm not losing my mind (not yet, anyway!)

Please let us know how things go. I'll look for your next post.

I'm finishing all of my posts tonight with this--GO TIGERS!!!!!!!!!!!!!!!!!!!!

Sue (from Michigan)

 

Thank you all for the big welcome, your all so nice ;D
Today is probably the best day i have had in weeks, tinitus, full ears slightly brain foggy but hey the floor is'nt moving woo hoo

 

Julie,
I am not new to Meniere's but am new to this site. Just found it last week and it is wonderful. I am amazed, thought I was the only one who had this "disease". When you tell people what you have they just look at you like maybe they should take a step back because if it is a disease, then maybe they will get it. LOL

Here's my positive posting for you:
I have had Meniere's for about 12 years and at first the attacks were frequent but in the last 5 years I have probably had only about 5 attacks. In the last 3 weeks though I have had 3 attacks - 1 severe and 2 minor. I consider them severe if I am out (having to hit the floor and lay there) for longer than ten hours. My hearing is not too good in my left ear (where I have it) but at least it has not gotten worst in the last few years. I always have the sea shell sound though in my ear - no matter what. BUT, I am active and do almost everything - except no more roller coasters, etc. for me. I have gone on far too long. Good luck to you.
Micki[color]

 

Hi Julie...first of all don't be too quick to accept a Meniere's diagnosis--there are so many things that manifest as Menieres that Menieres dx has almost become a sort of catch all diagnosis--it's "idiopathic" meaning that nobody really knows what causes it--so instead of being relieved to have a diagnosis, the Menieres diagnosis can just add more confusion. Having said that, no matter what the dx is, this is a great site for information and consolation. I had symptoms for a long long time before I got the Menieres diagnosis, which let me find this site which then gave me so much infomation on ways to handle my life and diet differently so that I could begin to heal.

Nevertheless, it seems that those folks who get better just sort of forget that they had "Menieres' and stop posting...this leaves the folks who are still battling with the more severe and frequent aspects. The impression to a newcomer can be that this is a seriously dehabilitating disease...and it seriously can be...but not for everyone.

(SORRY TO EVERYONE WHO FEELS LIKE I AM MINIMIZING THE MENIERES EXPERIENCE...MIND YOU, THERE IS NO ONE QUINTESSENTIAL MENIERES EXPERIENCE, IS THERE?)

A Menieres diagnosis can be (1) wrong (I am going to talk to my ENT later this month about changing my diagnosis to Celiac Disease which can manifest several similar symptoms...I could just as easily assert that my symptoms were coming from low blood sugar mixed with overwork and insufficient sleep!) and (2) unnecessarily alarming...as others have said...it is worst at the beginning (often) and then as you learn what your "triggers" are and how to avoid them...you can avoid the worse symptoms.

I welcome all the folks who disagree with me, but I do want to add my experience for your perusal.

Incidentally, if you are interested, pm me and I'll be happy to tell you the stuff that seems to be working for me!

Tamara

 

Welcome Julie 321--glad you found this site. Keep coming back and let us know how you're doing.
Jim

 

Welcome to the family

 

Hi Julie,
Just wanted to welcome you to the family!!!

Maggie
;D

 

I AM CONFUSED I AM NOT REALLY SURE I HAVE MENEIRS OR NOT MY M.D. DIAGONOSED IT WHEN I WENT TO HIS OFFICE I HAD A BOUT OF VERTIGO THAT WENT ON AND OFF FOR THREE DAYS AND BECAME VERY SICK AND COULD NOT GET OUT OF BED HE PRESCRIBED ANTIVERT 50MG WHICH IS ALOT I ASSUME BECAUSE I WAS FALLING WHEN I WENT FOR MY VISIT WITH HIM I HAD TO CALL BACK IT WAS NOT HELPING I THEN BECAME DIZZY HE THEN REFERRED ME TO AN ENT WHO TESTED Y GAIT AND SOME OTHER TEST AND PRESCRIBED VALIUM 5 TO 10 MG EVERY 6 SIX HOURS AND TO WEAR TRANSDERM SCOP 1.5 MG AND CHANGE EVERY THREE DAYS IF ANYTHING I BECAME MORE SICK AND DIZZY HE INISISTED I KEEP USING THE PATCH AND VALIUM HE SENT ME FOR AN MRI THE TECHICIAN BECAME VERY CONCERNED AND TOLD ME HE HAD NEVER HAD ANY ONE FALL OVER SO MUCH IT HAD GOTTEN TO THE POINT WHERE IF I WOULD LAY DOWN THINGS BECAME OUT OF CONTROL AND I WOULD LOSE MUSCLE CONTROL.

A FREIND HAD CALLED ME AND TOLD ME TO TAKE PATCH OFF THAT I WAS PROBABLY HAVING A REVERSE REACTION TO THE PATCH I DID READ A FEW SITE WHERE IT HAD SAID THAT COULD HAPPEN, NOW I HAVE REMOVED THE PATCH FOR 2 DAYS AND I AM STILL DIZZY BUT NOWHERE TO THE POINT THAT I WAS WITH THE PATCH I WAS STARTING TO HAVE TREMORS IN HAND THAT IS STARTING TO DECREASE NOW BUT I AM STILL SICK IN THE MEANTIME ENT CALLED BACK AND SAID NOTHING SHOWED IN MRI

 

Hi Carrie and welcome -

I hope you make your own post so it will be seen. It might get lost in this thread.

It's good your MRI is clear, but you should probably have other tests. Being dizzy all the time is not a typical Meniere's symptom, nor are tremors and loss of muscle control. It could be so many things. The best doc is a neurotologist (notice the T in the middle).

I hope you feel better soon.

 

Welcome Julie and Carrie!!

 

thank you all. Its a great place here to learn and meet lots of new friends that know how you feel.