Re: New Member - Doctors and dizziness ~Vicki

[Guest guest]

My ACM is 7.5mm and I have exactly what you describe. I went to physical

therapy which has helped me cope with the dizziness. Do an online search for

" vestibular therapy " These are the therapies I had to do! They worked pretty

well.

Also, I wear glasses that are .25 off from what I can see clearly. I don't need

glasses, but I wear them to literally blur my vision. The blur is EVER so

slight, BUT in order for the brain to register your visual location (and argue

that with your vestibular system) it has to register a CLEAR picture! The MAYO

clinic has done therapies with glasses smudged with vaseline... same theory. I

never leave home without my glasses.

Also, having transition lenses on my glasses helps as well. So, it could be the

lighting. I find most lighting too bright. With my chiari, EVERYTHING is a

little " over the top " all my senses. Things smell to strong, lights too bright,

heat/cold just too much to bear, noises too loud. That's just how it works.

My understanding (per my neurologist) there is a bunch of nerves at the base of

the brain which collect and send out messages, and this bunch is squished, so it

is sending out duplicate or mixed or sparse messages.. anyhow they're not

sending them like they used to before the chiari. My chiari was caused by a

bout of meningitis that was not diagnosed and my brain swelled and there was no

where for it to go but OUT of my skull/downwrd. I'm just glad it was viral

meningitis and not bacterial or I'd have been a goner.

OK so I use a cane when I go to busy places or places where I can get sensory

overload (lights, sounds, people, new environments). This helps me to keep my

balance.

The vestibular therapy you will see, tries to make you dizzy so that you can

learn how to UN-dizzy yourself. It works, it's hard, and I find that whatever I

do anymore in my life .. I must be COMPLETELY focused. There is no more doing

things without thinking. If I lose my train of thought I get so disoriented, I

just want to cry.

I have had panic and anxiety attacks when I have gotten overwhelmed. Lucky I am

not the type to show that outwardly so I am not embarassed, but it IS very

stressful to just be SO anxious and confused and dizzy and... just OVERWHELMED.

E-mail me back if you have any questions.

Good luck,

Jade

" vicki.winn " wrote: Hi

everyone,

I've recently been diagnosed with chiari malformation (8mm tonsillar

herniation). My general neurosurgeon who found the issue on the MRI

has referred me to a specialist at s Hopkins, Dr. Weingart. I

was wondering if anyone had any experience with him? My neurologist

isn't convinced that Chiari is causing my symptoms, but isn't an

expert to be able to determine for himself, which is why he's sending

me off to Dr. Weingart.

A sort of new symptom that I'm encountering has been giving me a lot

of trouble, and I was wondering if others had experienced it. I have

pretty bad bouts of dizziness and sort of a general disorientation.

I also have periodic incidences of vertigo. I have found that some

places seem to provoke the dizziness. Doing things like going to the

mall, a museum, or going to work make things MUCH worse almost as

soon as I get there. I'm wondering if its the lighting?? It just

sort of feels like my brain is overloaded and can't handle

everything. Has anyone experienced something like that? Any

suggestions to help cope with it so I can continue to work? As much

as I would love to blame my job for the dizziness, shopping makes it

worse too! What's a girl to do?

Thanks!

Vicki

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