Welcome

[bradleyjames]

My name is Brad Reynolds. I came down with Labyrinthitus in April of
2007. I posted videos[1] to youtube in an attempt to convey to
friends and family what I was going thru. An unexpected result was
that others with Labyrinthitus found these videos and started
contacting me. I've enjoyed responding to each reply but figured
that
it would benefit everyone to be able to have an area to get in
contact
with others who have this rare infection. So ask, reply, and
hopefully we'll all learn a bit about how to manage our lives after
Labyrinthitus.

-bradr

[1] http://youtube.com/user/bradleyjames1

[itzybitzy1960]

I was feeling really bad today; so I decided to look up Labyrinthitis
on Youtube; thank you for your Youtub Contribution . Firstly, I was
diagnosed with Labyrinthitis in March 2008, although I became sick in
February, actually on Valentine's Day. I went to the doctor's office
the day after, and I haven't been back to work since. I was not able
to walk for two weeks. I had to crawl until I got my wheel chair. I
can now walk, but tire easily. Although I walk three miles every
other day.

It is hard for friends and family to know what you're going through
because it has to do with persception. Now that I no longer have the
ocular tremors, and I can even use my computer again, I believe they
think I'm malingering. You see at home I can take breaks and lay down
every now and again,throughout the day. I still have nausea and
dizzyness. Everything is sureal at times it feels like i'm walking
with a box over my head. I have had the MRI's, CATScans, EKG's, etc.,
and the medicine that makes you feel sicker. I can not tolerate the
valium. It actually makes me hyperactive. When I was at my sickness,
the Valium had me up to 48 hours.
I still have nausea and dizzy but I am getting better day by day.

[Brad Reynolds]

Sorry to hear about you coming down with Labyrinthitis. You're right
on in that it's hard for others to know what you're going through.
You can't use a single well known term nor can you refer to it as some
sort of condition. It's crazy to think that the motion or others can
have such a negative effect. For me I try to avoid situations where
there's lots of motion or detail even after a year. Do you have
permanent damage? If so how much? I'm at the point where I don't
know if I've recovered and this is how it's going to be. I have 100%
damage to the nerve in my ear and at some point my brain is suppose to
adjust to that. It'll never be what it was but at least it won't be
confused. So I'm questioning whether this is as good as it's going to
get. Anyway, take care and thanks for signing up for the group. I
think it's important to get this information out there.

-bradr

[Jayme]

Hello, I just want you to know you will reach a point that you will
have good days. My nightmare started in March 2006, soooooo many tests
later, it is my inner ear. When I became sick in 2006, my right ear
became infected and that started it all. I was starting to drive
little bits, like brad said - in my 'comfort' zone, very close to
home, only in a couple block area.
I would go in very small stores so I had a quick exit in case I got
too dizzy as it will bring on a room spinner and I hate those. I
started getting worse again, long story short - my high blood pressure
meds were making me very dizzy and I didn't know it. I had lost 80 lbs
thru this and didn't need it anymore, the less my body needed it, the
worse the dizziness became.
I believe what happened is that my brain had finally starting
compensating for my ear and was 'fixing' my balance system, then the
drug started to screw it up again. I've been completely off the drug 2
months now and am struggling still but I think once again, my brain
has to re-train my balance system. It is very frustrating but I hang
on to those thoughts of those good days I did have so I know it's
possible to get there, it just takes time.

The other thing I found that helps is sunglasses in those big stores -
you can't do Ikea, I can't do Walmart!! Flourescent lighting will
really mess with you once you have a vestibular disorder, lots of info
on the web about it. Try to avoid that lighting or wear your
sunglasses, it's not a cure but it does help. I'm not able to go in
any big stores alone right now, and they are over a mile away so I
can't drive that far yet either. Prior to the bp meds messing me up, I
was shopping in a little store a block from home by myself, it was a
struggle but not real bad - again, that's how I know it will get
better but it can take quite a bit of time. It took about a year and
half for me to get to that point.

Brad, your videos are big help, I've read so much from others with
this - thedizzylounge.com is good place for support, but seeing the
actual person talk about what they are going thru is different than
just reading about it. I plan to share your video with some people so
maybe they can get a clue as to how I feel daily - they don't get it
when they can't 'see' your problem. When you said it's like being
drunk, but not in a fun way was the perfect description! I've been
advised to carry a cane to feel secure but I personally don't want to
draw any attention to myself, it will only bring questions. Keep doing
what you're doing, don't aggravate it by going places that will bring
on more stress, rest is impt. too. Just hang in there, I know it can
get better, our bodies are very capable of healing and you'll get
there. I know some days are very hard to believe that since every day
is a little different but good days will come :-)
Jayme

[Brad Reynolds]

Thanks for the email Jayme. You seem to have a positive head on your
shoulders which I admire, especially after 2+ years of this. Feel
free to share the videos with anyone you like. I've felt kind of bad
about some of them because they're mostly negative. But maybe that's
being honest, I'm not sure. I try to put on a smiley face but
sometimes it's hard. It's great to hear from veterans of this
ridiculous problem.

On the point you made about a cane I've actually thought of using one
to draw attention. I live in Seattle now and I walk to and from
work. If my head's not feeling too great walking the streets can be
kind of hard. I feel like if I had some visual que to show people
that I need them to get out of my way I feel like I'd be able to get
around a little better. A cane might provide that. People getting
too close or cutting me off can still startle me quite a bit. But I
was told by my physical therapist that a cane could inhibit the
rehabilitation process. Regardless, there are still days that I wish
I had that visual cue to let others know that it would be much easier
on me if they'd just move. :)

-bradr

[Patrice Goode]

I have another MRI tomorrow, oh, yeah. I still don't know how much damage
is done.
Man, I am glad I have insurance. Today is a happy day. Also, my
Neurologist says I should use a cane too.
Today is a good day.

--------------------------------------------------
From: "Brad Reynolds" <bradle...@gmail.com>
Sent: Tuesday, June 10, 2008 12:13 AM
To: <labyri...@googlegroups.com>
Subject: Re: Welcome