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849225 tn?1377284174

Vestibular Disorder?

Posted Months ago with no responses, Can someone Please shed some light for me Please???
by wabs09, 1 hour ago
Hello all!! I hope someone can shed some light on my symptoms or at least has the same symptoms so that we can share our experiences and give each other some comfort! Anyway about 6 months ago, I had bent over to do some laundry and when I went to stand up I had an enormous rush in my head and I thought I was going to pass out, it felt like someone hit me in the head with a baseball bat but without the pain.. Well that feeling went away after a few seconds but was followed up by very unsteadiness, and a feeling in my head that I cant explain.  It wasnt dizziness and it wasnt lightheadedness.  It is something that is so hard to describe I cant even really begin except to say that its almost like my eyes and my brain were floating and my eyes wouldnt focus unless I was looking straight ahead.  I went to the ER and after all of the tests they came up with Vertigo.  After having read up on vertigo, Im not sure thats what I am experiencing.  It just doesnt sound like I have the real vertigo symptoms.   I had for the two weeks prior to the "big incident" been feeling the brain floating sensation and off balance, but I thought it was due to being tired because it was mostly happening after 4 in the afternoon.  However since the "big incident" I still have that brain floating sensation on occasion that lasts from an hour to all day.  I did notice that if I lie down for a bit it usually subsides but sometimes if I start moving around alot it comes back.  I went to an ENT and after a few tests he came up with 31% nerve damage in my right ear and it is causing my balance problems and told me to deal with it, it is going to be something I have for the rest of my life and I will have good days and bad days, and sent me on my way.  Back to the GP.  She then sent me to a neurologist.  Of course here comes the MRI and eeg's which both came back normal.  He said more than likely I had a virus that caused damage to the nerves in my inner ear or due to the fact I had been diagnosed with a B12 deficiency at a level of 277, either of which will eventually go away in time with treatment for the B12 deficiency and the virus subsiding.  Still no answers!!!  Just educated guesses.  Very disheartening.  The problem is is that my symptoms keep changing.  Some symptoms get better and then I get new ones, and these symptoms are so hard to explain.  With intensive research this is what Ive come up with.  These are not in any particular order of severity, generally I have these symptoms all the time.

general feeling of not feeling well, always feel like im getting sick
Loss of balance
Trouble Focusing, objects around me jump, float, bounce, blur
Loud noise makes me feel like im going to pass out
Busy environments make me dizzy and feel like im going to pass out
Sensitivity to light, glare and moving or flickering lights, especially fluorescent lights
hard to walk in the dark
poor depth perception
difficulty concentrating
frequent loss for words
forgetfulness
fatigue
anxiety and panic
lightheadedness
depression
moodiness
feel hung over every morning
tinnitus
sensitive to loud or sharp noises
ear pain
slurring words
brain flashes?? really hard to explain (like someone is turning off and on a light)
sensitivity to vibration
feeling a vibration in my eyes and forehead sometimes when I talk, like someone held a buzzer to my face briefly
Irregular heart rhythms
Brain fog
muscle weakness
sensitivity to a change of hot and cold temps and changes in the wind
shadows moving make me fel like im going to fall down
objects around me look like they are moving or I feel like im moving when not
increased symptoms of eye movement, lack of balance when chewing something crunchy
increased lack of balance during and after eating

Im sure this is not a complete list, but it is the best I can do right now. Please help me.  Im at a loss for anyone to turn to anymore, I just get the run around from everywhere I go.
4 Responses
739091 tn?1300669627
Read my journals... I've just had all kinds of testing by specialists for this. I'll be glad to share this asI go along. :)
1954289 tn?1332606119
Hello Wabs 109
I have felt everyone of yuor symptoms and my heartfelt empathy tpwards your situation cause its like your life is taken away.I have Vestibular nerve damage by a Viral infection  i got i say around Sept of 2011.I awoke to loid ringing in my ears and my eyesight was screwy and i started to have dizzy spells till they became permanent a week before Christmas.I know yor sufferings but i can say it is now march of 2012 and after myriads of  test eeg baer hearing test vng thye have concluded i have vestibular nerve damage and i have gone on with my life.i am now on celexa for anxiety but all other meds i quit taking cause it cause compensation to slow down.i am dizzy but i go on i ride my bike 4 miles a day plus jog 1 mile and sometimes i throw up form the dizzyness when i envoke it with physical activitys but i am slowly getting better and my brain in compensationg for the injury,just remeber 1 month ago i couldnt gwet out of bed,just gotta give it time and no matter how bad the dizzyness gets just do things envoke dizzyness and then keep going,use your mind as a weapon cause this is what you ahve to retrain to achieve your compensation and it may take a long time but dont ever give up,3 monthsa down the road and im at 85 percent thats a long way from where i was at a wek before xmas where walking 2 feet was a problem:)
849225 tn?1377284174
Did u get my email reply?
849225 tn?1377284174
Sue, you replied to my post on med help a couple years ago telling me I could read your journals and follow along with your orogress for a vestibular disorder.  I tried and it says your journals are empty ;( I'm wondering how you are doing and if we could maybe get in touch and share stories?? I'm still suffering with this horrible illness and am at my witts end:(

Looking forward to your reply

Gina
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