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Old 01-06-2010, 07:46 PM   #46
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by studyin View Post
>>> he doctor stated it was not true labyrinthitis because my eyes did not jerk or i had no hearing loss?

That's nonsense. It really cracks me up when I hear some of the stuff doctors will tell you about dizziness.

S
I guess that was what I was trying to say a few posts up when I said that a neurologist will likely tell you that is MAV.
I have seen several neurologists and none of them seem to know much about inner ear disorders.
I agree that a *good* neurologist *should* be able to distinguish between a central problem and a peripheral problem.

 
Old 01-06-2010, 07:49 PM   #47
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by warpony2310 View Post
he stated my systoms we talked about were migraine ,he stated the doctor gave me verapmil last time i had bppv becauce of the migraine associated with vertigo.

they are going to check me next week he thinks the nerve behind my eye in inflamed,a xray machine not mri in his office.mmm never heard of that. you?
I am not sure.
I know that I was tested at one point for optic neuropathy by a neurologist.
Does that sound like what your doctor mentioned?
Maybe you can call and talk to the receptionist and ask which test you have scheduled so you can read about it before you go?

 
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Old 01-07-2010, 09:58 AM   #48
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

It is very refreshing to read similar experiences from other people in these boards. It makes you feel less alone in this awful situation.

One thing I wanted to ask is about possible recovery for cognitive issues. When I first experienced these vestibular issues 12 years ago, my symptoms included a lot of dizziness, clumsiness, walking into door frames, etc. As my brain learned to cope with the new situation, the dizziness and clumsiness receded, but all sorts of cognitive problems settled in its place. As I've been reading about this condition, the brain takes energy from other mental tasks (concentration, memory, vision, etc) to compensate for the broken balance system.

Aside from the on-and-off mild dizziness, my major complaints are the following:
  • Major brain fog and mental fatigue.
  • Horribly poor memory.
  • Difficulty concentrating on tasks. Mind wanders off by the minute. Always zoning out completely, even in the middle of conversations.
  • Difficulties reading (lines seem unstable, and have to re-read them over and over again). Misreading text (letters switch).
  • Trouble focusing my vision on things; double vision, and lots of sensitivity to light (fluorescent lights make me particularly foggy).
  • Visual discomfort with certain patterns.
  • Slurred speech or changing the order of words in sentences without intention.
  • Constant "hangover" sensation.
  • Headaches.
  • Depression and loss of self-confidence. Constant sensation of having to reorient myself.

As I mentioned, it seems like my body and mind adapted quickly to the "new situation" reducing the clumsiness and dizziness, but the result was a major loss of cognitive, visual and other mental capabilities.

So far my doctor has scheduled me for additional motion tests and vestibular training.
  • Are my symptoms common to other people with vestibular issues?
  • Anyone had positive experiences with VRT? Did vestibular training exercises help with the cognitive issues?
  • Since the brainport machine is not available in the USA and not affordable for my pocketbook, what else can I do to help with these cognitive issues?

Thanks everyone.

PS: One thought I wanted to share is the "lack of order". The worst thing that this condition (or whatever it is that's happening to me) has done is shattering the sense of structure from my life. Before my problem started, everything seemed to have an order, an organization, a beginning and end, a sense of progression.

After this condition settled, everything in and around my life looks like a mountain of random little Lego pieces with no defined structure. Everything takes too much to comprehend. I can't figure out the structure of thing, or follow processes. I forget everything, and everything is a jumbled mess, like what's going on inside my head. Trying to make sense of this mountain of scattered Lego pieces is exhausting.

I was in my way to earn my PhD 12 years ago. I had a flawless academic and professional background. Then this happened.
I've been stuck in unsatisfying jobs below my potential since then, because I can't reach much further. Some people think I'm stupid. My symptoms have had a devastating effect in my life and my career. Words can't describe the mess this has created.

Last edited by Julius2009; 01-07-2010 at 11:56 AM.

 
Old 01-07-2010, 10:02 AM   #49
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

second mourning in verapamil went to 7 eleven got coffee 20 minutes after i got up (good for me)went home walked arourd trying to force migraine(sounds funny ha)i need to see the benifits of verapamil so far so good,,,,last nite was good watched a little tv eyes hurt a little. does anyone no how long it takes for the meds to get in system?

 
Old 01-07-2010, 10:06 AM   #50
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

julius your case is just like mine,i believe you could be having migraines and they could be bothering the balance even more (when my migraine calms down so does the balance thing (although still there).mmmmmm

 
Old 01-07-2010, 11:18 AM   #51
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

also i have mild turning in my vision when walking down hallways ten years of it,i think this could be also causing migraine,,,mmmmm when i walk on uneven pavement this also causes migraine i did it this mourning and nothing yet,,,mmmmm

 
Old 01-07-2010, 11:20 AM   #52
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

i kinda feel like a bozo all these years people here have been talking about MAV until someone told me what it meant,,,,,,,,mmmmm

 
Old 01-07-2010, 05:41 PM   #53
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

>>> i kinda feel like a bozo all these years people here have been talking about MAV until someone told me what it meant

Don't worry about it. It took me 2 years to "get it" that I was 1) a migraineur and 2) that this was MAV. It's hard to see the truth sometimes when you're in the midst of this junk. If it wasn't for two very smart friends I might still think I was simply suffering decomp from VN.

Scott

 
Old 01-07-2010, 06:39 PM   #54
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Julius2009,
Yes. I think that many of the cognitive issues you mention are common.
Look for an article/speech called Cognitive Aspects of Vestibular Disorders by Kenneth Erickson.
Your lego analogy is very vivid.
I know that I have a lot of trouble with sequencing and with spacial memory.
I can't hold a map in my head. I get lost in stores like Target and have to ask a salesperson where the exit is. I have to write down where I park in a parking deck (I keep a notepad clipped to my keychain for this purpose.)
I have trouble remembering what season it is, what year it is, etc.

There is something called "cognitive rehabilitation." Personally, I don't know much about it, but it might be worth looking into.

 
Old 01-08-2010, 11:26 AM   #55
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

woke up today eyes hurt no dizzy stuff ,realized i was having a migraine eyes hurt bad 30 minutes ,,,sit down and relaxed and the pain released very tired from this stuff.

 
Old 01-08-2010, 02:27 PM   #56
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

does anyone no if the meds cause dry eye and burning or maybe its just pollen season?

 
Old 01-09-2010, 08:00 AM   #57
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by jezsab View Post
Isn't it amazing to connect with people who understand what we are all going through?!!! When I read the patient testimonials for the Brainport on the UK website I could not stop sobbing I was so overcome that these people would know exactly how I felt each day. The brain injury left me unable to cry for several years but it was like a dam burst in me that day!

I hope for you that you have another opportunity to continue your rehabilitation with the Brainport. Never give up hope that you can change your life.
Jezsab,
Thanks for taking the time and energy to share your inspiring story!
And I know that energy can be hard to come by!

Thanks for coming to the inner ear discussion board.
It is interesting how much we have in common- someone with a brain injury and someone with an inner ear disorder.

That is so great to hear about your speech. I am excited to hear about someone who has seen so much progress- from slurring to being an excellent public speaker!! (Lots of people with no injury/illness/disability at all stink at public speaking.)

I am sure that you are inspiring many.

I am considering purchasing a device. It truly was amazing to participate in the clinical trial. I can get one in Canada for $10,000USD.

I just read the first chapter of The Brain That Changes Itself. Very cool stuff!

 
Old 01-09-2010, 08:13 AM   #58
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Jezab,
When you get a minute,
do you mind answering a question I asked on the the discussion titled "BrainPort Balance Device"?
I figured I would leave it there in case someone else wanted to read it. That way all the information would be in one place and easy to find.
I'm so glad we met.
Thanks!

 
Old 01-09-2010, 12:19 PM   #59
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

bad day eyes still hurt oh well a little dizzy thing ,,,thing i need to try something else.

 
Old 01-09-2010, 02:41 PM   #60
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Re: Just diagnosed with Vestibular Imbalance Disorder... after a decade!!! Now what?

Quote:
Originally Posted by warpony2310 View Post
does anyone no if the meds cause dry eye and burning or maybe its just pollen season?
I did not have that side effect from verapamil.
You might want to call the pharmacist and ask if this is typical.
Maybe talk to your doc about the possibility of a lower dose or different med?

 
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