officially disillusioned--from Dizzy Diva--one year out

[nannettesea]

Hi,
Okay, so much for reflexology.  And supplements.  Eat vegetarian, eat meat, it's my digestion, gallbladder, etc etc etc.  It's in my HEAD.  I know the body is a machine with interacting parts, but....taking milk thistle and today told it causes dizziness.  S***.

1 year anniversary tomorrow, probably why I'm so blue/bitter.  Everyone said give it a year.

One bright hope--a woman who'd been through brain trauma suggested special glasses and seeing an osteopath who works on the head.  Now we're talkin'.

Can someone just take this out of my head, pleeeeeeese?  Or take the dang head off.

Dizzy Nan--not so Diva-ish today.

P.S.  Thanks for listening.

[Survival Nate]

Well I dont have any 2 cents but here

[Captain Deb]

My physical therapist, who specializes in balance disorders said one big thing to me when I first started with her.  It was something like this: "I know this sounds crazy and hard to believe, but the only thing that helps get rid of the dizziness is doing stuff that makes you more dizzy." Boy was she right! I cussed that woman for 6 months, but I walked out of there, after seeing her on and off for almost two years,  able to drive again, stand on one leg in the dark without falling over, and pretty much get around like a normal person. At least when my head wasn't hurting! The BEST thing for balance retraining is walking, particularly on a treadmill on a slight incline.
At the one year mark I was still pretty dizzy, but I made the MOST progress, balance-wise, between year one and year two.

Please don't give up hope, dear Nan! You are still healing. At almost 4 years, I have a "new normal." The world is still slightly cock-eyed and my head thumps pretty hard in a grocery store or at the mall, but it beats having no head at all!
Your fellow "Wonkyhead"
Capt Deb

[nannettesea]

Thanks, Capt.  You are always a good reminder for me.  And you've been through much more hell (and still are) with the migraines.  I read with the MdD that motion aggravates the problem, but with vestibular loss it is necessary.  Yippee.

I will work on keeping hope, keep on keeping on.

You continue to inspire, as does everyone here.

Even Nate's two cents!
love and hugs,
Nan (DD)

[Peanut]

Dear Nan,
I echo Deb's entreaty. You are still healing, really!  I am over three years from surgery and still improving, if at times at an agonizingly slow pace.  At last I have more glimpses into the world as I used to know it.  Glimpses, I wrote, and mean it.  I have to keep reminding myself of my progress and I won't pretend it is not frustrating much of the time.  Certainly does help to know of progress beyond the one year mark.  And there are those who get back to work and on with their lives; it's just that we are not they.  
Just so you know: I drove again after six months, again at night after two and a half years. That was last November 15th, I remember it distinctly, because for the first time I didn't look for a ride but felt I could manage driving and parking after dark.
 Ã‚                        I read a whole book again after over two years.  I have experienced improvement in my vision out of AN side eye, but still find this pre-posting screen most difficult to see.
So, Dizzy Diva, just a couple of examples to encourage you, to hold out renewed hope that more healing can take place even after the predicted time frame has elapsed.Not to pretend the slow pace is welcome but to remind you that at least it can happen.
Keep us posted,
Peanut

[nannettesea]

Thanks, Peanut.  You also inspire...just because I'm not one of the "lucky" ones doesn't mean this won't get better!
love and hugs,
Nan (DD)

[Peanut]

Aw, it's Ok, DD, and guess what?  I get disillusioned too, make no mistake about it.  I need to hear of those extended recoveries too. 
We'll confer again, meanwhile, take heart.
Peanut

[Brendalu]

Nan,
We can be bitter together.  I did get news yesterday.  It didn't help, but it explains a lot.  My MS is  interferring with my balance and dizziness issues.  The new MRI shows more gliosis (scaring and lessions) and the glioma in the central nervous system has grown a little.  That was not expected.  I am switching PT's and going for water therapy, it is easier on the arthritis and it doesn't hurt and leaves bruises and broken bones when you fall. 
I have also gone to the eye doctor who prescribed blue tinted lenses to help with the light driving my head nuts.  She said that only blue or orange works at the present time.  Being a red head I opted for the blue.  Maybe I will try the orange next time.  Give yourself a hug.  I'm sending a big one your way((((((((((((((((((((((((((((((((((((((((((())))))))))))))))))))))))))))))))))))))))))))))))))))
I don't think this hug is too lopsided even though I am!!!!!

BrendaO

[Captain Deb]

My PT used a sort of "bio-feedback" method with me. First she taught me to "calm my head down" and it involves sitting in a hard chair and making contact with as much "surface" as possible. Then she talked to me in a real soft voice "Feel the chair under you, feel the floor under your feet" etc. until I was nice and calm.  She called it "grabbing some surface" Then she taught me to do it standing against a wall. That went on for about 2 weeks.
 Then she interspersed these "grabbing surface" episodes with bouncing around on foam, standing in front  of a patterned cloth with playing cards attatched to it and doing eye shifting excercises, walking slowly on a treadmill while doing head turns, anything to make me real dizzy. In between I would "grab surface" and with her help, calm the dizzy down.  Then we moved to the bio-feedback-phonebooth-from-hell, which has a moving floor and walls and foot sensors and a video screen and a parachute harness!  All the while training me to calm down the dizzy by grabbing surface.

I still use the grabbing surface almost on adaily basis, esp in my car after driving or in the grocery store. My favorite grocery has a big bench that I head to after shopping. I sit there grabbing surface while my ice cream melts!

Amazing what you can learn from a good "physical terrorist!!"

Today, everyone grab some surface!
Capt Deb

[matti]

Sweetie Nan - I have followed you on your journey from your first post almost 1 year ago.  Your search to find answers was a long and arduous one, but you my dear never gave up and when you did get the answers, you continued to pursue every avenue in search of relief. Your persistant determination and incredible inner strength is an inspiration to all of us. With extreme dizziness, you continue to push yourself to do things that you did not think imaginable just a few months ago. While I know you are not healed just yet, you have come a long way. I am so proud of you!!!!

The healing process is frustrating at times, but it is also amazing. Who would have thought that as far as I am in my AN journey, that I would still be healing. Never give up hope! 

Luv ya,
Cheryl

13 more days till we meet. YEAH!!!!

[Battyp]

Boy cheryl said that so eloquently!
You're still a Diva...cause only Diva's can wear pirate gear and pull it off! 
I know you've had a tough road as we've been sharing our road together for some time now!  I know we'll prevail and will scream some more along our path but we'll get there!  Don't give up, remember we're all behind you 110%!!
Big Hugs to you!!

BP

[nannettesea]

Love to all of you...Cap'n, you are my reminder to keep doing the hard stuff, and to KEEP trying and not let the dizzy monster win!

Cheryl, sweetie, your post made me cry!  I've been feeling so much worse the last few days, walking is like one huge "bobbing for apples" game without the fun--but I did my 30 minute walk today anyway!  As much crying as I do, I AM still trying.  I feel there is a key out there...hard to imagine I inspire anyone, but the fact you say it makes me feel blessed....thank God we have each other to keep on!

Batty--you are an inspiration to me always, you keep pushing until you get what you want and need.  I am sooooo proud of you.

As a crew you have gotten me through so many rough days.  Pearly girly included, even now when you are having such tough times.

love you ALL and BIIIIG HUGS--get to see Cheryl in 13 days--wooohoooo!

Nan (DD)

[Gennysmom]

Hey girlie...sorry it took me so long to find this post...was a little busy yesterday.  Happy anniversary!!   He he, yeah, right, huh? 

As always, hang in there and believe that "it will be alright"....I said so!!!  Can't wait to see you again real soon!!!!!  Have a great time in New York!!!!  Hugs, loves, and messy smooches!!!!!

Kathleen

[Captain Deb]

One of my best tools is a treadmill. I don't have room for one in my house, so I use it at the gym--has a HANDHOLD which is great for those of us who don't feel good about walking outside alone. My problem is a one-lane dirt road with teenagers and tourists  who fly around blind curves--I can't tell which direction they are coming from. Nan, you will get to the point where you can live with it! For some of us it just takes longer. At one year, my headaches were overtaking the balance issues as the priority problem. But they were definitely a problem. Between year one and two, I made the most amount of progress with the balance despite the fact that the headaches got worse. Invest in a treadmill! All the acupuncture, herbs, etc and whatever in the world won't give you as much progress as one of these will. That's just my personal opinion--I ain't no doc and don't want to presume to dispense medical adivice.
Big huge hugs and smooches to ya,
Capt Deb

[nannettesea]

Smoochies to Kathleen and Capn!

Proud of Kathleen for getting back to work!!! Yeahhhhhh!  Cutters soon!

Don't have room for a treadmill in the condo, Capn, but will keep working on it.  i just don't get why I've seen no progress.  I appreciate all the suggestions and will one day soon just start feeling better.  Will have to stop treatments in the near future as they are bankrupting us, so will have to get to the acceptance stage, but keep doing exercises, walking, and as Kathleen said, "it will be allright."

More fat, wet smoochies
DD