permanent? dizziness--anyone out there?

[nannettesea]

Hello, all-
It's Nan again.  To Rory, Cheryl, Deb, Debbie, Howard, Raydean, Larry--sorry if I missed anyone--thanks for all your support and replies to my posts....

I remember seeing someone's post about being permanently dizzy.  Other than that, I've found no one in my category except those who had bi-lateral vestibular problems or other brain problems.  Now 7 months post-op and dizziness no better.  I've heard thru the grapevine it can take a year.  I'm trying to hang on to hope that I'll be in that category.  Doing PT, walking, getting out as much as possible.  Trying to stay positive, reading some good books (I'll probably never read again once I'm better!), praying a lot--didn't do much of that before, but I am now!

My doc says only a more serious condition would keep me from getting better...a stroke, or other serious brain problems.  My MRI shows nothing like that.  I'm just finishing at the Mayo, bad experience with Dr. Driscoll there, other docs great but no other answers.

If ANYONE out there is still dizzy this late in the game, or has any other information or resources to offer, I'd be very appreciative.  P.S. to Raydean--my doc says I don't have Meniere's because my symptoms are constant--with Meniere's, they come and go.

Thanks for listening,
Nan

[Battyp]

Hmm..interesting about menieres...I talked to a guy who had an surgery and that developed after surgery and he complained of constantly feeling dizzy...how strange.

Have you done vestibular rehab?  I know they make me do eye exercises to help with the dizzy spells  as long as I don't turn my head to fast I do ok.  I know there are those of you out there making snide comments about my dizzy spells....sometimes they are like a blond moment only better 

Just think cruise and all your symptoms will go away...esp since you started that last thread  )


speaking of books have you read any of the stepanie plum novels by janet evanovich?  I guarantee you will laugh at least one good belly laugh a book...more than likely at least three good belly laughs with lots of chuckles along the way!

[nannettesea]

Hi, Batty-
Sounds like you are doing better, have enjoyed reading your posts and all the talk of cruises.  Unfortunately I got sick with this on my wedding cruise...sick since I got married, wish I could appreciate the humor in it--everyone else does!

So your friend with Meniere's was dizzy all the time?  Do you still communicate with that person, or was it passing?

Have been doing vestibular rehab, no help at all.  Have been getting slack with it as a result.

Thanks for the reading recommendations--will keep them in mind.  I need to laugh!
Nan

[Captain Deb]

Hey Nan
3 1/2 years and I'm still dizzy!  Only it's much, much much better.  The thing that helped me absolutely the most was getting out and walking.  I wish that I had had a treadmill, thoug--something to hang onto.  I am able to go to the gym now and I do 3 miles on the treadmill there, but I still have to hang on.

 I know this for a fact, you have to be absolutely persistant as hell about doing your exercises, which is a pain in the patoot.  I kept a couple of playing cards around and just practised head turns and eye movements relentlessly.  Sounds like you have explored reasons why you are having such difficulty, and barring some other physical problem, your brain should start to compensate.

 I felt that PT wasn't doing much for me either, the progress was soooo slow.Don't give up, though!

Captain (Dizzy) Deb

[ppearl214]

Hi Nan,

Oh, batty is just dizzy, period!  Have spoken to her on the phone and trust me on that one!

Got sick on my post-wedding cruise... *coff* same as you. Got rid of him the following year!

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.

Phyl

[Static]

I still get dizzy when riding in the car and somene else is driving, it's weird.  I get very dizzy walking into a dark room and cannot walk around and turn my head fast without "swaying".  I wish I could go for a walk and really enjoy it.  When I walk, I  have to pay strict attention to what I'm doing at all times or............ well, I start to sway or stumble, etc.  After I come home from a walk, I am so tight and tense, I feel like I would have been better off just staying home!  Steps make me dizzy for some reason as well.  I'm just over 2 years post op.  Just living with the new way of things and trying to get by.  I guess it could be worse!  People that I work with and hardly know make jokes about my dizziness all the time and I just laugh and go along with it but sometimes it really hurts and people really don't understand what we are all going through.   Hang in there and I will too! 

[ppearl214]

does anyone find the dizziness to be worse when you look down towards the ground/floor? I've been running into that one a LOT lately. I can't look down anymore, even when walking... really throws me off -kilter.

Phyl

[matti]

Hi Nan - I was thinking it might be Meniere's  Disease too. When my son was in high school, his friends mom had meniere's. She was misdiagnosed for welll over a year. There were days that she could not get out of bed due to the dizziness and nausea. She ended up leaving her job. I know you have as well. Many mornings after I picked up her son, I would head back and help her out. It really sounds similar to what you have told me you are experiencing. I know once diagnosed she was put on a therapy program that included a restricted diet, no caffeine, low salt....I know she did suffer allergies which was also a trigger. She was put on medication and in conjunction with the rest of the program, she was doing fine. Went back to work and was able to get control of her life again.

I am also dealing with AN issues. About 1 1/2 years ago I started having hypersensitivity on my AN side that radiates down my left arm. My MRI shows no sign of a tumor. It has been 8 years since my surgery. the consensus is that my facial nerve is misfiring. I was told that it can continue to heal even this many years later. What is really weird is that I have always had the tight pony tail feeling on that side, but I don't anymore. I also feel like I am carrying a heavy weight on the side of my head. They want to put me on a medication called Neurontin. what I have read about it has made me decide I don't want to take it. As long as I know what I have, and it is not life threatening,(which it isn't) then I am good to go!

I am still dizzy, but not to the point where it is debilitating, like it has been for you. I am sorry it didn't work out for you at Mayo. I just know that there is someone out there that will be able to help you.
I am keeping you in my prayers

Take care,
Cheryl

[Battyp]

Nan I haven' talked to him since my surgery.  His wifes school is one of my clients and I know he's more than willing to talk, email and share his knowledge.  He's a very nice guy.  I'll make contact with her and pass on the info.  Maybe he'll know something to help.

The humor on here is the only thing helping me get through a depressing, scarey, horrible situation.  It's about the only contact I have with real people who aren't too busy to listen and care.  It also helps hearing I'm not alone in all this for a while I felt so isolated in trying to cope with the after math of surgery.  Each and everyone of you have helped me in some way...and like phyl Im truly grateful!

[Battyp]

Boy I'm so long winded tonight I just can't shut up.  (how long will it take phly to comment on that one?  )

I have more trouble looking up than at the ground when walking. 

I was told by the ENT that your brain uses three areas to help when going from light to dark and after an surgery all three things are compromised.  So he suggested to put a small flashlight on my key chain or in my pocket to help with walking at night, going into a movie theater etc....

ok, the phone rang and now I dont' remember what all I was going to say...oops 

[matti]

Me too battyP, I always have to look down when I walk. Can't tell you how many times I didn't see cars coming my way. Can't hear em or see em. LOL! I must have a guardian angel.

matti

[nannettesea]

Thanks to Batty, Cheryl, Phyl and Deb--for your posts.  I feel so alone with this.  I stopped the forum for a while cause I got too depressed, thinking there's no one else out there like me....

I find it worse looking up/down, too.  Static, thanks for the comments about walking.  I am constantly deep breathing in order to avoid getting anxious while walking or standing.  Though I don't struggle with balance, the dizziness is overwhelming.  But the fresh air is good for me,  I know.

I am in the angry mode today.  Why me, why not getting better, I feel like crap all the time, not a moment without this dizziness.  If it was Meniere's disease, at least I would have an ANSWER.  Pre-surgery I had a rocking dizziness, not nearly as bad as what I have now.  If I had known this would be the outcome....coulda woulda shoulda.

Phyl, hope the vertigo subsides.  I hear dizziness can occur after radiation therapy, but should be temporary.

Thanks again for listening.
Nan

[nannettesea]

Static,
When did you go back to work after surgery?  I tried after 8 weeks, worked two months half time, think it made me sicker.  Had to quit altogether, applied for disability.

How is your concentration and anxiety levels?  That, and my fatigue, make me unable to work.

Just talking to you guys helps, esp days like today.  Now that I'm on anti-depressants, my doctor can't tell me it's all in my head.  Hahahahaha.That's what they used to tell women in the old days.  You're hysterical, housewife's syndrome.  Oddly familiar!
Nan

[ppearl214]

Nan, you are not alone hun. I know it's been a "not so good" day for you (is that putting it mildly?) but know that we have oodles of huggles for you!  My vertigo, pfffft!  I'll deal... and as for you... you're stuck with us, whether you like it or not!

xoxo
Phyl

[Battyp]

Nan we all have our own issues so you are not allowed to leave us again! 

No matter what someone is going through we are here to support you, brainstorm ideas/solutions, let you vent, yell scream whatever it takes to give you some relief from your symptoms if even for a little bit. 

I remember how frustrated I was when I first signed on in November.  2.5  mos post op and was told piece of cake surgery back to work in 3 to 6 weeks.  Yeah right!  I'm in the process of applying for disability with social security and looking to be retrained for a new career and was told  MAYBE I could be trained.  Ouch! 

We know it's hard and we know some of us walk away unscathed and some of us don't fair as lucky but we all made it so far and will continue through this journey together!!