I am sure they ruled out Menier's (spelling disease) but the only other
thing is "what medications are you on.

I was on a drug called zelnorm for IBS constipation.  I was on it for 6
months and had weird experiences with vertigo. Drove me crazy.  Then all of
a sudden I got some medical update on my nursing folder. Well what do you
know, zelnorm can and does cause extreme vertigo in some people.   Then
came the warning to GI docs to make sure they know this when prescribing.

I stopped it and bingo..gone.

I surely hope your case is as simple as this one.   I feel badly for you.
Wish there was more to tell you on this one.

janers

Dear George,  Janers, and IronJustice--
Thanks for your rapid responses. George,  I will try out the magnet
therapy, although I must admit I don't have much faith in the idea.
Janers,  Meniers was ruled out early on, since I have no tinnitus and
no hearing loss.  As for medications,  I am on Plaquenil 400 mg, which
can cause dizziness, but I suspended Plaquenil for two weeks to test if
that was the cause, and there was no change.  I didn't think there
would be since I've been on Plaquenil since 2001 with no ill effects.
My other medications at this point are Prednisone (now at 5 mg. and
tapering off).  This was started AFTER the vertigo began in the hopes
that the vertigo was autoimmune in nature.  My last medication is
Coumadin (10 mg.) which is necessary to control my antiphospholipid
antibodies syndrome.  It is not associated with vertigo. As for the
possibility of the vertigo being due to Polycythemia / erythrocytosis,
IronJustice,  my most recent blood tests indicate that my hematocrit
and red blood count are normal, so that's not the problem.
If anyone else has any suggestions,  I'd love to hear them.   Again,
thanks to all who responded.  This group is great!
Alicia

== 2 of 4 ==
Date: Mon 19 Sep 2005 11:50
From: George Parton

       Dear Alicia,
       I was afflicted with the vertigo early on in my Lupus
experience.
After trying the medical solutions I was referred by my doctor directly
to Doctor William H. Philpott MD in Oklahoma. My doctor sent my records
to him, he prescribed magnetic field therapy and provided the magnets
and apparatus needed to use them. It worked!  It worked very quickly!
Compared to the prospect of taking the mind numbing dope I had been
prescribed for up to a year it was a Godsend!
       Dr. Philpott is considered to be the ultimate magnetic field
guru but I
didn't know that at the time.   I would suggest caution in purchasing
magnets from other than a quality source as some of the fad driven
knock-offs are a joke.  The magnets I have are 1/2 inch thick and about
2 1/2 inches in diameter and are worn over the temple area while
sleeping. Some of the knock-offs were about the size of a dime.

       I think the following is his correct address:
       Philpott, William H
       17171 SE 29th St.,
       Choctaw, OK 73020-6453
       (405) 390-4898

       I hope this will be of help to you, it was for me.

       George Parton

Alicia wrote:

== 3 of 4 ==
Date: Mon 19 Sep 2005 15:08
From: "janersagain"

I am sure they ruled out Menier's (spelling disease) but the only other
thing is "what medications are you on.

I was on a drug called zelnorm for IBS constipation.  I was on it for 6
months and had weird experiences with vertigo. Drove me crazy.  Then
all of
a sudden I got some medical update on my nursing folder. Well what do
you
know, zelnorm can and does cause extreme vertigo in some people.   Then
came the warning to GI docs to make sure they know this when
prescribing.

I stopped it and bingo..gone.

I surely hope your case is as simple as this one.   I feel badly for
you.
Wish there was more to tell you on this one.

janers

== 4 of 4 ==
Date: Mon 19 Sep 2005 19:36
From: "ironjustice@aol.com"

All of your above problems INCLUDING vertigo have been shown to be
linked to excessive oxidation in the body ..

Polycythemia / erythrocytosis .. too many red blood cells .. leads to
MANY problems .. and erythrocytosis / polycythemia leads to increased
iron levels in the body and increased iron levels lead to excessive
oxidation / rust ..

Oxidation / rust leads to DECREASED anti-oxidants in the body.

Coincidentally Dr. Shute over fifty years ago claimed vitamin E /
tocopherol to be a CURE for spontaneous abortion / miscarriage.
-----------------------------------------

Symptoms caused by the elevated hematocrit are present initially in 30
to 50%
of patients and may cause the patient to seek medical attention for
symptoms
such as plethora (too much blood), headache, dizziness, visual
disturbances,
inability to concentrate and parethesis (numbness). Related findings at
diagnosis can include hypertension, a high cardiac output state and
evidence
of vascular status. Significant arterial or venous thrombosis occurs in
one
third to one half of uncontrolled cases, and these events may precede
the
diagnosis (heart attack, stroke, pulmonary embolism, portal vein clots
(veins
leading to liver), etc.

There are a number of other metabolic abnormalities which occur in MPD
patients, including patients with PV. Briefly, MPD patients, including
PV
patients may exhibit high uric acid levels (hyperuricemia, 50%) which
can lead
to joint pain and gout, low cholesterol levels (hypocholesterolemia),
high
histamine levels (hyperhistaminea) and histaminuria occur in two thirds
of MPD
patients which can produce puritus (itching), heart burn, acid
eructation,
peptic ulcer, small bowel hyper motility, flushing and angioneurotic
edema.
Hypermetabolism is commonly manifested as weakness and fatigue that
occur in
MPD patients not experiencing anemia.

Phlebotomy has been one of the most common initial therapies for many
polycythemic patients. There has been a lot of experience with it. The
purpose
of phlebotomy is to reduce the red blood cell mass (RBC mass)-that is,
the
total number of circulating red blood cells, and to do it fairly
quickly, at
least in the beginning when the hematocrit (Hct) is high.

the rest of the story is at

http://www.acor.org/mpd/PVFAQ.html#1

Who loves ya.
Tom

Dear REB and Ruth:

Thanks for your comments and suggestions.

Scopolamine is fine for acute episodes (I used to use the patches for
airplane and boat rides), but long-term it interferes with the
brain's ability to compensate for the vertigo, so my doctors advise
against using it unless absolutely necessary.  Ditto for mezclizine
(Antivert, Dramamine, or Bonine).

Early I on checked my thyroid,  and it's normal.  I've been on a
low salt diet with high water intake since early August. I'm also
using a pedometer and trying to walk at least 3,500 steps (1 mile) a
day.

I  started vestibular rehabilitation therapy last week and am already
seeing some good results.  Today I've actually had some short periods
of clear headedness, and the exercises (focusing on an object while
turning head rapidly from side to side and then up and down,  bending
down and then looking up, etc.) are becoming much easier to do without
feeling nauseous. I feel hopeful that the VRT may be the solution.  Of
course, that still leaves me in the dark about causes.

Has anyone else had any experience with VRT?

Alicia

== 1 of 4 ==

Date: Tues 20 Sep 2005 10:12

From: REP

Even if your ultimate dx is something else, you might want to ask your

doc about Scop-Derm patches, which are worn behind the ear for three

days and then changed. They are enormously helpful to me when I'm
having

a spell of whatever the hell it is.

== 3 of 4 ==

Date: Tues 20 Sep 2005 07:49

From: Ruth Tay

HI Alicia

Welcome     With Lupus you get all sorts of extra problems such as

vertigo.  When I had it the treatment was the same as you have are

using.  One doctor thought it might be low thyroid.  Have you been put

on a restricted salt regime?  Another doctor suggested power walks
which

was a trial but managed with two canes and always looking straight

ahead. Have had lupus for 21 years.  Mine went after my heart,
esophagus

and joints [had to have a shoulder replacement].  Thank heaven for

the times in between flares!  Wishing you the best          ruth

Dear Herb--Yesterday I saw my neurotologist, and he basically has given
up trying to find the cause of my problems.  He told me to trust in the
vestibular rehabilitation therapy and get on with my life.  Needless to
say,  I am not satisfied with this conclusion.  I want to know if
there's more I should be doing to prevent the vertigo from hitting me
again and again.

How would I go about checking whether it's the antiphospholipid
syndrome at work?  Is there a test I should have? My rheumatologist
considers that all we can do is keep me adequately anti-coagulated.  Is
there some other treatment I should consider?

Any suggestions would be appreciated.

Thanks,

Alicia

Dear BJ--Thanks for your support. Everybody's been really welcoming and
helpful.

Alicia

Dear BJ--Thanks for your support. Everybody's been really welcoming and
helpful.

Alicia