Re: Dizzyness from nerve damage/ from H

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In a message dated 9/20/02 11:28:03 AM Pacific Daylight Time, Hob writes:

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Here is some new info about being dizzy or losing hearing from RP or

RP/vasculitis. This is about nerve damage. It does not apply to more

" mechanical " damage.

RP patients who experience dizzyness should know:

1) The vestibular nerves and facial nerves for left and right are in

separate boney channels on each side.

2) A nerve can be affected by inflamation of tissues surrounding it

(compressing it or cutting off blood supply) or by inflammation of any kind

that affects its blood supply directly by destroying the bood vessels. Loss

of nerve function from any cause is called " neuropathy " .

The tissue RP attacks - inflames - is any tissue containing Collagen

II and Collagen IX and possibly other types of collagen (research is

on-going). Cartilage contains those elements but so do many other body parts

that are not cartilage.

(Do not let a doctor tell you that you cannot be having RP symptoms because

there is " no cartilage " in a given area. Few - if any - doctors can tell you

if there is Collagen II or Collagen IX in the involved tissue.)

Some kinds of vasculitis also cause neuropathy. Vasculitis with RP

can cause destruction of the small vessels feeding the nerve but growth of

new blood vessels (after treatment stops further damage) can bring healing to

the nerve itself depending on the extent of the damage.

3) When dizzyness goes away it can be because the loss of vestibular

function is so severe that all dizzy response is gone. Or it can be because

normal vestibular function has returned.

Be vigilant. RP patients who lose dizzy response on only one side

and then find themselves dizzy again may be experiencing a new flare

involving the other side. Testing to be sure that is not what is happening

is required. ( ALWAYS ASK if you should discontinue any medication 48 hours

before the test. The person making the appointment may forget to give you

those instructions.)

Returning dizzyness may also be healing on the damaged side. This

can occur at any time -- in my case the dizzyness went away after a year of

treatment and began to return (not severe as before) after 2 1/2 years.

Healing old RP nerve damage apparently can be on-going as long as

flares are suppressed. Just how much function returns depends on how severe

the damage was (a nerve that actually died will never function again) and how

much time has passed without a new flare.

My own experience:

I was retested this week (after two years) this week because of a new bout

of ear ringing and returning dizzyness after more than a year without any.

The main reason for the test was to be sure that there was not an undetected

flare going on that was increasing loss of vestibular function. The test

showed an improvement in vestibular function and hearing loss unchanged from

two years ago.

The test showed that both problems were caused by nerve damage - a result

two years ago, too. The Doctor explained that patients like me would

probably always experience ups and downs in the results of these tests but

this change was encouraging and most likely indicates the nerve is healing.

Two years ago I do not remember that I was told not to take Meclazine or any

sleeping aid 48 hours in advance of the test. This time I received those

instructions. Just how much the test would be affected by those medicines

may be significant. Maybe the 78% loss of function 2 years ago was somewhat

elevated because I had taken meclazine or had a sleeping pill the night

before.

The doctor also checked my vocal chords which would not close 2 years ago

(causing hoarseness and contributing to a chough) - most likely from

neuropathy in that area. Now the opening has become a very small slit so

there is also improvement there - possible healing of affected nerves. The

cough is much much better recently.

So there is always hope!!

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