permanent? dizziness--anyone out there?

[Larry]

Nan,

You will have to join the cruise together with those other mad monks out there! if that doesn't help you through a bad day, nothing will. Agree with batty - you are well and truly part of the team so get in there and play hard.

Re the dizziness, I am 3.5 years post op, luckily, no facial or eye problems but still get dizzy. On a walk, I have to look down. If I gaze into people's houses (name isn't peeping Tom either, maybe leisure suit Larry but not peeping Tom) I will wobble a fair bit.

Now Phyl, I could tell that you are as mad as a hatter from your 5 million posts, (lol) but why are you the only one that gets dizzy when looking down?

Larry

[DeniseSmith]

Good Morning.  I am not permanently dizzy. But I do get dizzy going up and down small inclines and when the carpet is a busy pattern.   I go to the Y and the treadmill, I have found is the best thing for helping me.  Also, when I walk outside, I make sure someone is with me so I can look around.   

On the treadmill, I hold on tight, and look left, center, right, center, left center and keep repeating.  I  stop moving my head when i start to feel nauseous.  The more often i do this the longer I can do it without getting nauseous.   I am slowly improving. 

Denise

[Static]

Nan,
My surgery was in January '04 (I didn't have a job at that time, had just left one around May of the year I was diagnosed), had a CSF leak repaired the May after my surgery then took the summer off so to speak.  I applied and started a new job that same November ('04).  I did ok, had lots of trouble hearing and the people I worked with just didn't seem to understand that I couldn't hear when I was on the phone and had a hard time hearing in general (imagine that).  Moved to a new job September of '05 and have run into many similar situations.  I can't concentrate when there are alot of things going on around me and apparently that is an issue with my employer.  Just have to learn to try and cope, I do need a job.  Hang in there!

[Kilroy1976]

Concerned as well as the vertigo is becoming more pronouced lately and although not having micro-surgery, am concerned about post-CK reactions such as dizziness/vertigo.  Will monitor this thread for other's replies.

Mine got much worse after radiation (even fell a few times) but Bats is right, it was only temporary. I'd say within two weeks it was back to the way it was before the treatment.

[nannettesea]

Thanks EVERYBODY for replying and being so supportive.  I really needed to hear from you.  Everybody has unique experiences, but total one-sided vestibular loss affects us all.  To the gang and Larry, you're a hoot.  Larry ought to post a picture with his leisure suit.

Static, sorry about the trying times at work, and Batty, I've applied for disability, too, as you can see.  One of the real shifts I'm having to make is that my value doesn't lie in working.  I was a workaholic, and my self-esteem was really tied up in that.  Not to mention not having any income--my poor husband, but he's been a real trooper.  At least I have someone to help out financially.

Batty, if you find your friend, appreciate it if he will let me contact him.

Sounds like I just have to keep pushing myself, esp to exercise.  What happens is, I push, then I collapse the next day, very predictable.  So it's like I pay for trying hard!  Will be upping my anti-depressants soon, so that should help.

Thanks again,
Nan 

[minnkris]

The reply from Battyprincess about going from light to dark was really interesting, because I notice that the most. When I go from shade to sun or sun to shade, i get loopy! Not so much indoors, but definately outdoors. I live in Las Vegas (lots of sun), maybe I should move somewhere more gloomy. Anyway, I had GK with bad vertigo as an initial symptom.

[Raydean]

"maybe I should move somewhere more gloomy"

The Pacific Northwest has been pretty gloomy this year, We'd be glad to have ya. <g>

Raydean

[minnkris]

Why thank you Raydean. That's very kind. I should check it out when it's too stinkin hot for words here in the summer!

[Larry]

Nan,

I'm not sure if you want to see me in my leisure suit. In fact, I know you don't. Mind you, they say that shock treatment is a good cure for things, maybe it would shock your brain into submission and you wouldn't have vertigo anymore!

Larry

[okiesandy]

Phyl,

I had CK almost 3 months ago. Not dizzy. Just balance change. Balance did not get worse, just different. Some facial numbness that comes and goes. because my AN is close to the trigiminal nerve. Nothing bad at all so far. Haven't missed a day of work and I work about 9 to 10 hours a day and drive 45 minutes each way.

I also have cochlear hydrops, a form of Meniers Disease in my only remaining hearing ear. Also Autoimunne Inner Ear Disease which may be related to the Menier's. Menier's is usually accompanied by fluctuating hearing loss, sometimes fullness in the ear and tinnitus. I did have the feeling of almost having motion sickness. I am now on a 1500 mg salt reduced diet and the feeling of motion is gone and so is the stuffy ear feeling.

I can't walk in a streight line now. Couldn't do it before CK. I am still out there buying shoes and hitting the casino once in a while. The only thing that has really changed is my stress level. The relief I feel because I got off high center and had treatment is the biggest plus. I find that I do get tired a little easier. Of course I have read that having a AN=fatigue, loss of hearing =fatigue, radiation=fatigue, and imbalance=fatigue. I refuse to believe it could be AGE syndrome. 

Blessings,

Sandy

[Battyp]

I"m thinking we should all go visit minnkris in vegas to eliminate our financial woes and as long as we stay indoors we'll all be fine from dizzziness.  What ever would we do indoors in vegas..hmmm...

[Kathyaquino]

I'm almost 7 years post-surgery.  Dizziness was my only symptom when I finally got diagnosed with the AN.  I was afraid I'd be arrested for drunk driving & couldnt walk a straight line to save my life.  Anyway, I still have days & sometimes weeks at a time when I feel this same kind of dizzy/wooziness.  It was really bad for the first 5 yrs. after surgery, but it has gotten better in the past year.  I'm glad it's finally getting better since I'm having surgery April 7th. to have the same tumor removed again.  The worst & most bizarre thing that ever happened as far as my lack of balance is concerned happened about a yr after surgery.  I was getting ready to go out & I bent down to look in a mirror & I fell over & my arm landed on my burning hot curling iron.  My husband had to lift the top half of my body up (I fell on the bathroom counter) & I ended up with a horrible burn & a memorable scar.  I tended to fall forward for some reason.  I am tired of feeling dizzy/woozy - maybe I have some other illness that's still causing it, but I don't know what that could be & neither does my doctor.

Kathy

[minnkris]

Maybe after your cruise, you should plan a trip to Vegas! I was kidding about moving, I love it here, cause I'm crazy!

[Static]

Nan, I can understand what your talking about regardingyour "value in working".  My job requires me to do things I know I can do but guess what? I can't do them anymore.  My concentration is horrible, it's so easy to get side tracked especially when so many things are going on around me at once.  Sometimes it makes me feel very stupid but I know it's not "normal" for me as much as it is the "new normal" for me.  Not liking it so much and want to hang on to my job as I can't see ever being approved for disability.   With my family dependng on me, (my hubby works as well but we need both incomes), losing my job because of the new me is a very scary thought 

[nannettesea]

Larry, hey, I'd try anything--shock from a leisure suit, anything!