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Old 12-31-2009, 01:33 AM   #1
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Unhappy Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Well, after a decade of chasing my tail, trying to figure out what was wrong with me, and driving myself and every doctor crazy in the process, a neurotologist at NYEE has discovered I have a inner-ear vestibular imbalance of over 20% in the right side.

My major complaints were the following (among many others):
  • Mental fatigue and lethargy
  • Attention and concentration problems
  • Memory issues
  • Sleep disturbances and headaches
When this first started to happen (more than a decade ago), it came with a lot of dizziness, clumsiness, and nausea. It feels as if my body has compensated and adapted to the problem, and now I don't get that much dizziness, although the cognitive issues remained as bad.

I can't emphasize the nightmarish effect these cognitive problems have caused in my life. They have literally turned my life upside down to the point that I feel I lost an entire decade of my life.

The doctor has discarded an inner-ear neuronitis, but wants to keep looking to see what caused this. He has suggested a brain MRI, and in the meantime has sent me to take some sort of vestibular rehabilitation therapy. I'm scheduling these for the coming weeks, but I am a bit skeptic that some exercises will get rid of this pervasive mental nightmare i have experienced for 12 years.

Here are my questions:
  • Is vestibular rehabilitation therapy effective in restoring the cognitive problems that many people with inner-ear problems experience? I read it has mixed results.

  • If VRT training is not the solution, what other options are out there? Medication? Intervention?

  • Has anyone successfully recovered from these pernicious cognitive problems?

  • Is 12 years too far down the rabbit hole to come back from this nightmare?

  • Is there anything else I should ask my doctor? Alternatively, is there a top inner-ear specialist in New York with experience on cognitive problems?
I just want to know what solutions are there to end this nightmare. I want to be and feel like I used to 12 years ago, before all this started.
Any help would be appreciated.

Last edited by Julius2009; 12-31-2009 at 07:21 AM.

 
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Old 01-01-2010, 11:48 AM   #2
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

I am not sure if I can answer all of your questions...
But I am glad to hear that you are starting vestibular rehabilitation therapy (VRT).
From what I understand, some of the cognitive problems occur because our brains are dealing with too much at once.

Your brain is trying to compensate for the dizziness, therefore there's no "brain power" left to think of that word that is on the tip of your tongue, or to remember your best friend's phone number.
If the VRT helps your eyes to work together better (a problem for many with inner ear disorders) or helps with balance, it will "free up" some "brain power."

I have bilateral (both ears) vestibular loss.
Recently, I participated in a clinical trial of the BrainPort Balance Device.
One day, during the trial, I was walking through a doorway and the thought that went through my head was, "That was easy!"
I stopped and realized what a strange thought that was.
Then, it occurred to me that walking through doorways had been *difficult* for me before! It had been difficult for years, but I never realized it on a conscious level.
I just had fatigue, and headaches and cognitive problems.

 
Old 01-01-2010, 02:08 PM   #3
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

WOW i have the same thing for ten years now started with bppv and the balance thing and it never went away!

NOW to make it worse i have labyrinthitis on top of it and get flare ups for the last two months,i am on state disibilty but don,t no if i will be ready when my fmla gets done saving my job!

I just started those cooksey balance exercises and do them every day my back is against the wall ,i am 50 now.the exercise do help but does anyone no anything about labyrinthitis will it go away?

warpony

 
Old 01-01-2010, 02:11 PM   #4
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

how can i get the brainport device?

 
Old 01-01-2010, 03:07 PM   #5
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

julius i have brain fog thing to ,jump start your senses in the mourning it would take me 3 hours to wake up or get started this excercise does work for me i got part of it from the internet!

get a broom stick no mop head ,put hands on each end of stick,push stick out away from your body,,hold 15 seconds ,,sit like baseball catcher push stick out again hold 15 seconds ,,,,,,hold stick over your head look at ceiling hold fifteen seconds ,,,keep doing these till your balance feels good i find this wakes me up in the mourning,,,,,,,my eyes hurt right now because of labyrinthitis it sucks,,,,,,,,,,,,but the balance exercises give me some relif after 10 years!!!!!!i can shadow box like a boxer but the labyrinthitis trashes my vision it hurts and gives me the dizzies when it hits.


my balance is screwed up but those cooksey exercises are giving me some relif even after ten years,,,,,,,,,,,,,,,,,,,,,,you can get agorafobia (afraid to go out )but i go out to gym but lights hurt me i go to store when i can but it bothers me,,,,,

MY SAYING IS (I WILL TAKE WHAT GOD GIVES ME TODAY AND BE HAPPY WITH IT)

GOODLUCK I WILL LET YOU NO MY PROGRESS!!!!

 
Old 01-01-2010, 03:07 PM   #6
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

The BrainPort Balance Device by Wicab is currently in the process of clinical trials for FDA approval. They are not available in the U.S. for purchase because they are not yet FDA approved.
I was very lucky that one of the clinical trials was taking place at my neurotologist's office, so I got to participate in a trial. In order to qualify for a trial, I believe you must have at least 25% percent loss in at least one ear. I could be wrong about that...but I think that's correct. Have you had an ENG/VNG?
I think that Health Boards does not allow links to websites, so that's about all the info I can give you.

Back to the discussion of cognitive issues... I remember that a psychologist came to my "real life" dizziness support group to discuss cognitive issues a few years ago. There was some specific therapy for it. I am going to try to find about more and come back. The cognitive issues may be affecting my memory.

 
Old 01-01-2010, 03:13 PM   #7
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

By the way the stick thing ,,,is like a tight rope walker at the circus it magnifies your balance or positional sense,like a dancer fred astair you see those dancers with those little black sticks in front of them it makes or sharpens their dance skills this is all true gogle search it!

 
Old 01-01-2010, 03:15 PM   #8
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by alborde View Post
Back to the discussion of cognitive issues... I remember that a psychologist came to my "real life" dizziness support group to discuss cognitive issues a few years ago. There was some specific therapy for it. I am going to try to find about more and come back. The cognitive issues may be affecting my memory.
Hi Alborde,

I would really appreciate if you can get that info about specific therapy for balance-related cognitive problems. I feel like I´ve been in a deep mental fog for a decade.

Thanks a bunch!

 
Old 01-01-2010, 03:24 PM   #9
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

I also think that anti-convulsants have helped me with the "brain fog."
I am not sure if that would work for you or not.

I have a dual diagnosis of both bilateral vestibular loss and MAV (migraine associated vertigo).
The anti-convulsants are used as a migraine preventive.
I never had migraines before I acquired the inner ear disorder and my migraines are primarily silent (no headache, primarily symptoms such as veritgo, confusion, and disorientation.)

 
Old 01-01-2010, 04:54 PM   #10
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

alborde thanks i found there site and wait to here from them ,,the device do you where it all the time or in rehab and does it balance ,,,hallways bother me and mild turning in vision tell us more please and how long have you used this ?

 
Old 01-02-2010, 05:45 AM   #11
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by Julius2009 View Post

My major complaints were the following (among many others):
  • Mental fatigue and lethargy
  • Attention and concentration problems
  • Memory issues
  • Sleep disturbances and headaches
This is all textbook migraine associated vertigo. I am amazed at how many people are walking around with this condition and do not know it. It's a sad state of affairs that most doctors out there know very little about migraine and how commonly it can cause chronic vertigo.

Your case is not unusual in that it has gone on for years – decades even for some. There's a great paper by John Waterston MD FRACP in Melb, Australia. He treated a bunch of people with MAV, one who had this for over 10 years and they had complete resolution of symptoms on 0.5 mg pizotifen, an anti-migraine med. There's a number of different meds to try after altering your lifestyle first. You do not have to live like this.

Best ... Scott

 
Old 01-02-2010, 07:20 AM   #12
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by studyin View Post
This is all textbook migraine associated vertigo. I am amazed at how many people are walking around with this condition and do not know it. It's a sad state of affairs that most doctors out there know very little about migraine and how commonly it can cause chronic vertigo.

Your case is not unusual in that it has gone on for years – decades even for some. There's a great paper by John Waterston MD FRACP in Melb, Australia. He treated a bunch of people with MAV, one who had this for over 10 years and they had complete resolution of symptoms on 0.5 mg pizotifen, an anti-migraine med. There's a number of different meds to try after altering your lifestyle first. You do not have to live like this.

Best ... Scott
I just wanted to chime in and say that it is possible to have BOTH MAV and vestibular loss/damage that shows up on an ENG/VNG.
It could be that your initial diagnosis is correct but you have MAV also.
I agree that there are a lot of medications to treat MAV.
As I mentioned above, I take an anticonvulsant for MAV.

Last edited by alborde; 01-02-2010 at 07:23 AM. Reason: to add the last two sentences

 
Old 01-02-2010, 07:34 AM   #13
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by warpony2310 View Post
alborde thanks i found there site and wait to here from them ,,the device do you where it all the time or in rehab and does it balance ,,,hallways bother me and mild turning in vision tell us more please and how long have you used this ?
As a participant in a clinical trial, I used the device for 8 weeks. I took it home and used it for 20 minutes each morning and 20 minutes each evening. I did balance exercises with it in my mouth.

 
Old 01-02-2010, 10:59 AM   #14
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

question for all,can my balance issues be creating MAV i sometimes feel like two pistons are going back and forth between my ears?

Wow is this how you feel eyes sore ,lights bother you,bending over bothers you?

almost like motion bothers you?

Joe,,,,,

 
Old 01-02-2010, 11:30 AM   #15
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by alborde View Post
I also think that anti-convulsants have helped me with the "brain fog."
I am not sure if that would work for you or not.

I have a dual diagnosis of both bilateral vestibular loss and MAV (migraine associated vertigo).
The anti-convulsants are used as a migraine preventive.
I never had migraines before I acquired the inner ear disorder and my migraines are primarily silent (no headache, primarily symptoms such as veritgo, confusion, and disorientation.)
alborde,

are you taking topamax for mav? what dose are you taking?

i found it interesting you said it helped with your brain fog b/c i thought one of the side effects of anti-convulsants was that it causes cognition to get a lot worse (bad memory, loss of words, etc)

 
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