Lupus Support - Newbie question re: vertigo

Author

Newbie question re: vertigo

Alicia

2005-09-24, 2:37 pm

Dear All--

I've been lurking for a while, but have finally decided to come out in
the open. I've had systemic lupus since I was 17 (33 years), way back
when nobody knew what lupus was. In 1983, I was also diagnosed with
antiphospholipid antibody syndrome (Hughes) after a long series of deep
vein thromboses, miscarriages, leg ulcerations, and other circulatory
miseries, and I have to take Coumadin for life. After years of
alternating between non-steroidal anti-inflammatory drugs, Prednisone,
and Plaquenil, I finally settled into a fairly stable lupus remission
in 2002 on 400 mg. daily of Plaquenil.

Then in April of this year, I developed a very mysterious case of
vertigo which has yet to let up. Extensive testing (auditory, balance,
autoimmune, cerebral) has yielded negative or normal results in most
cases, and the doctors (neurologist, rheumatologist, neurotologist,
physiatrist) have not been able to come up with a clear cause for the
vertigo or a cure. The two prevailing theories regarding my case are
that: 1) it's autoimmune vertigo (although it did not respond to
Prednisone) or 2) it's due to vestibular neuritis caused by a virus.
At first, I partially controlled the spinning, tilting, loss of
balance, and nausea with Antivert, but now the doctors are asking me to
stop using it and work on developing cerebral compensation via
Vestibular Rehabilitation Therapy.

I'd like to know if anyone else in this group has suffered from similar
symptoms or has any recommendations to make regarding possible causes
and/or treatment of this vertigo. Any input would be greatly
appreciated, since I'm really tired of lurching around like a drunken
sailor.

Alicia

George Parton

2005-09-24, 2:37 pm

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:
> Dear All--
>
> I've been lurking for a while, but have finally decided to come out in
> the open. I've had systemic lupus since I was 17 (33 years), way back
> when nobody knew what lupus was. In 1983, I was also diagnosed with
> antiphospholipid antibody syndrome (Hughes) after a long series of deep
> vein thromboses, miscarriages, leg ulcerations, and other circulatory
> miseries, and I have to take Coumadin for life. After years of
> alternating between non-steroidal anti-inflammatory drugs, Prednisone,
> and Plaquenil, I finally settled into a fairly stable lupus remission
> in 2002 on 400 mg. daily of Plaquenil.
>
> Then in April of this year, I developed a very mysterious case of
> vertigo which has yet to let up. Extensive testing (auditory, balance,
> autoimmune, cerebral) has yielded negative or normal results in most
> cases, and the doctors (neurologist, rheumatologist, neurotologist,
> physiatrist) have not been able to come up with a clear cause for the
> vertigo or a cure. The two prevailing theories regarding my case are
> that: 1) it's autoimmune vertigo (although it did not respond to
> Prednisone) or 2) it's due to vestibular neuritis caused by a virus.
> At first, I partially controlled the spinning, tilting, loss of
> balance, and nausea with Antivert, but now the doctors are asking me to
> stop using it and work on developing cerebral compensation via
> Vestibular Rehabilitation Therapy.
>
> I'd like to know if anyone else in this group has suffered from similar
> symptoms or has any recommendations to make regarding possible causes
> and/or treatment of this vertigo. Any input would be greatly
> appreciated, since I'm really tired of lurching around like a drunken
> sailor.
>
> Alicia
>

janersagain

2005-09-24, 2:37 pm

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

ironjustice@aol.com

2005-09-24, 2:37 pm

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

Jesus Was A Vegetarian!
http://jesuswasavegetarian.7h.com

Man Is A Herbivore!
http://pages.ivillage.com/ironjustice/manisaherbivore

DEAD PEOPLE WALKING
http://pages.ivillage.com/ironjustice/deadpeoplewalking

REP

2005-09-24, 2:37 pm

In article <1127139614.042461.309570@f14g2000cwb.googlegroups.com>,
"Alicia" <pousada.a@gmail.com> wrote:

> Then in April of this year, I developed a very mysterious case of
> vertigo which has yet to let up. Extensive testing (auditory, balance,
> autoimmune, cerebral) has yielded negative or normal results in most
> cases, and the doctors (neurologist, rheumatologist, neurotologist,
> physiatrist) have not been able to come up with a clear cause for the
> vertigo or a cure.

I don't have SLE; that's finally been ruled out but I have many of the
same symptoms/clinical signs, incuding weird connective tissue. Anyway,
keep this in mind - I don't have Lupus! I have about a thousand other
things wrong with me, and one of them is recurring months' long bouts of
vertigo (dizziness, "sinking feeling,' nausea, anorexia and fainting). I
haven't had quite the extensive work-up you have (I don't take steroids;
perhaps that's why) but have been given a tentative dx of Meniere's,
which really has no signs that shows up on tests. This dx is a little
wacky because Meniere's is not supposed to last for a months without
break, but hell, it's a dx of something Not Fatal for a change.

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.

--
"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather

Alicia

2005-09-24, 2:37 pm

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:
> Dear All--
>
> I've been lurking for a while, but have finally decided to come out in
> the open. I've had systemic lupus since I was 17 (33 years), way back
> when nobody knew what lupus was. In 1983, I was also diagnosed with
> antiphospholipid antibody syndrome (Hughes) after a long series of deep
> vein thromboses, miscarriages, leg ulcerations, and other circulatory
> miseries, and I have to take Coumadin for life. After years of
> alternating between non-steroidal anti-inflammatory drugs, Prednisone,
> and Plaquenil, I finally settled into a fairly stable lupus remission
> in 2002 on 400 mg. daily of Plaquenil.
>
> Then in April of this year, I developed a very mysterious case of
> vertigo which has yet to let up. Extensive testing (auditory, balance,
> autoimmune, cerebral) has yielded negative or normal results in most
> cases, and the doctors (neurologist, rheumatologist, neurotologist,
> physiatrist) have not been able to come up with a clear cause for the
> vertigo or a cure. The two prevailing theories regarding my case are
> that: 1) it's autoimmune vertigo (although it did not respond to
> Prednisone) or 2) it's due to vestibular neuritis caused by a virus.
> At first, I partially controlled the spinning, tilting, loss of
> balance, and nausea with Antivert, but now the doctors are asking me to
> stop using it and work on developing cerebral compensation via
> Vestibular Rehabilitation Therapy.
>
> I'd like to know if anyone else in this group has suffered from similar
> symptoms or has any recommendations to make regarding possible causes
> and/or treatment of this vertigo. Any input would be greatly
> appreciated, since I'm really tired of lurching around like a drunken
> sailor.
>
> Alicia
>

== 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

Ruth Tay

2005-09-24, 2:37 pm

In article <1127139614.042461.309570@f14g2000cwb.googlegroups.com>,
"Alicia" <pousada.a@gmail.com> wrote:

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 All--
>
> I've been lurking for a while, but have finally decided to come out in
> the open. I've had systemic lupus since I was 17 (33 years), way back
> when nobody knew what lupus was. In 1983, I was also diagnosed with
> antiphospholipid antibody syndrome (Hughes) after a long series of deep
> vein thromboses, miscarriages, leg ulcerations, and other circulatory
> miseries, and I have to take Coumadin for life. After years of
> alternating between non-steroidal anti-inflammatory drugs, Prednisone,
> and Plaquenil, I finally settled into a fairly stable lupus remission
> in 2002 on 400 mg. daily of Plaquenil.
>
> Then in April of this year, I developed a very mysterious case of
> vertigo which has yet to let up. Extensive testing (auditory, balance,
> autoimmune, cerebral) has yielded negative or normal results in most
> cases, and the doctors (neurologist, rheumatologist, neurotologist,
> physiatrist) have not been able to come up with a clear cause for the
> vertigo or a cure. The two prevailing theories regarding my case are
> that: 1) it's autoimmune vertigo (although it did not respond to
> Prednisone) or 2) it's due to vestibular neuritis caused by a virus.
> At first, I partially controlled the spinning, tilting, loss of
> balance, and nausea with Antivert, but now the doctors are asking me to
> stop using it and work on developing cerebral compensation via
> Vestibular Rehabilitation Therapy.
>
> I'd like to know if anyone else in this group has suffered from similar
> symptoms or has any recommendations to make regarding possible causes
> and/or treatment of this vertigo. Any input would be greatly
> appreciated, since I'm really tired of lurching around like a drunken
> sailor.
>
> Alicia

George Parton

2005-09-24, 2:37 pm

Dear Alicia,
I am not surprised that you do not have any faith in the magnetic
therapy. Neither did I when it was prescribed by not one but two medical
doctors. For me it worked and made a believer out of me. I only suggest
that you investigate the possibility. YMMV
Blessings and best wishes,
George Parton

Alicia wrote:
> 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
>

Herbwormwood

2005-09-24, 2:37 pm

X-No-Archive

Hi,
Welcome to the group.
I also have systemic Lupus (diagnosed 26 years ago) and
antiphospholipid antibody syndrome (Hughes) which was diagnosed around
10 years ago after a series of CNS problems including vertigo.
I am stabilised with the antiphospholipid antibody syndrome (Hughes)
on warfarin and aspirin but I have residual balance problems de to
damage to cerebellum.
Ask your docs to rule this out for you as antiphospholipid antibody
syndrome (Hughes) often affects the CNS.
The other thing I had a couple of times was labrynthitis (not sure if
spelled OK) but if your ENT check which came out clear it is probably
not that.
Please come back soon and let us know how you get on!
Herb
Tyneside,
UK

Alicia

2005-09-24, 2:38 pm

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

Alicia

2005-09-24, 2:38 pm

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

2005-09-24, 2:38 pm

Hi Alicia,
I suffer from that when I am in a major flare. Occasionally at other times
too. It is never an ongoing problem like it is for you. That sure must be
tough. I don't have any suggestions. I see that others had some ideas for
you though. I really just wanted to welcome you. I am glad you found us.
BJ-Sk. Canada
"Alicia" <pousada.a@gmail.com> wrote in message
news:1127139614.042461.309570@f14g2000cwb.googlegroups.com...
> Dear All--
>
> I've been lurking for a while, but have finally decided to come out in
> the open. I've had systemic lupus since I was 17 (33 years), way back
> when nobody knew what lupus was. In 1983, I was also diagnosed with
> antiphospholipid antibody syndrome (Hughes) after a long series of deep
> vein thromboses, miscarriages, leg ulcerations, and other circulatory
> miseries, and I have to take Coumadin for life. After years of
> alternating between non-steroidal anti-inflammatory drugs, Prednisone,
> and Plaquenil, I finally settled into a fairly stable lupus remission
> in 2002 on 400 mg. daily of Plaquenil.
>
> Then in April of this year, I developed a very mysterious case of
> vertigo which has yet to let up. Extensive testing (auditory, balance,
> autoimmune, cerebral) has yielded negative or normal results in most
> cases, and the doctors (neurologist, rheumatologist, neurotologist,
> physiatrist) have not been able to come up with a clear cause for the
> vertigo or a cure. The two prevailing theories regarding my case are
> that: 1) it's autoimmune vertigo (although it did not respond to
> Prednisone) or 2) it's due to vestibular neuritis caused by a virus.
> At first, I partially controlled the spinning, tilting, loss of
> balance, and nausea with Antivert, but now the doctors are asking me to
> stop using it and work on developing cerebral compensation via
> Vestibular Rehabilitation Therapy.
>
> I'd like to know if anyone else in this group has suffered from similar
> symptoms or has any recommendations to make regarding possible causes
> and/or treatment of this vertigo. Any input would be greatly
> appreciated, since I'm really tired of lurching around like a drunken
> sailor.
>
> Alicia
>

Herbwormwood

2005-09-26, 5:23 pm

X-No-Archive

Hi,
Unfortunately antiphospholipid
syndrome can cause problems even when you are on anti coagulants, your
anti coagulation needs to be at the right level, mine was upped to 3-
4.5 as I continued to have symptoms at 2-3.
I am on a yahoo suppport group for antiphospholipid
syndrome and some people there continue to have symptoms while heavily
anti coagulated.
I also take prescribed aspirin as an anti coagulant.
I don't know of any test which checks whether antiphospholipid
syndrome can cause your vertigo, but it did cause it with me. It was
due to seizures. I went dizzy, the room would spin, I was trembling
all over, pouring with sweat, very nauseous as if I was going to vomit
and so weak I collapsed, sometimes I would get hallucinations of
blinding lights obscuring my vision, or feeling of impending doom,
tingling or numbness, this happened many times over a few years.Your
neurologist should be able to advise on this issue and tests for it. I
don't know if your vert igo is the same as my "seizures".
Best wishes,
Herb,
UK
http://members.lycos.co.uk/herbwormwood/

Alicia

2005-09-28, 9:43 am

TOPIC: Newbie question re: vertigo
http://groups.google.com/group/alt....6557d857d403ae2
==============================================================================
Dear Herbwormwood--

Thanks for the response. A lot of what you said applies to me. I will
consult my neurologist to see if she has any recommendations regarding
the antiphospholipid syndrome. (I had only asked my rheumatologist, but
the only thing he does is keep me at INR=3 at all times.) Maybe I'll
contact Dr. Hughes in London and see what he has to say. I will also
check out the antiphospholipid group on-line. Thanks again for the
suggestions.

Alicia

== 1 of 1 ==
Date: Mon 26 Sep 2005 06:57
From: "Herbwormwood"

X-No-Archive

Hi,
Unfortunately antiphospholipid
syndrome can cause problems even when you are on anti coagulants, your
anti coagulation needs to be at the right level, mine was upped to 3-
4.5 as I continued to have symptoms at 2-3.
I am on a yahoo suppport group for antiphospholipid
syndrome and some people there continue to have symptoms while heavily
anti coagulated.
I also take prescribed aspirin as an anti coagulant.
I don't know of any test which checks whether antiphospholipid
syndrome can cause your vertigo, but it did cause it with me. It was
due to seizures. I went dizzy, the room would spin, I was trembling
all over, pouring with sweat, very nauseous as if I was going to vomit
and so weak I collapsed, sometimes I would get hallucinations of
blinding lights obscuring my vision, or feeling of impending doom,
tingling or numbness, this happened many times over a few years.Your
neurologist should be able to advise on this issue and tests for it. I
don't know if your vert igo is the same as my "seizures".
Best wishes,
Herb,
UK
http://members.lycos.co.uk/herbwormwood/

Andy

2005-09-28, 9:43 am

In article <1127827513.865486.14470@z14g2000cwz.googlegroups.com>,
Alicia <pousada.a@gmail.com> wrote
[
> Maybe I'll
>contact Dr. Hughes in London and see what he has to say.

You need to know that he either just has retired, or very soon will be.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

Alicia

2005-09-30, 1:16 pm

Dear Andy--Thanks for telling me that. If I can't contact him, I'll
contact one of his associates.

Alicia

Alicia

2005-09-30, 1:16 pm

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

Alicia

BJ wrote:[vbcol=seagreen]
> Hi Alicia,
> I suffer from that when I am in a major flare. Occasionally at other times
> too. It is never an ongoing problem like it is for you. That sure must be
> tough. I don't have any suggestions. I see that others had some ideas for
> you though. I really just wanted to welcome you. I am glad you found us.
> BJ-Sk. Canada
> "Alicia" <pousada.a@gmail.com> wrote in message
> news:1127139614.042461.309570@f14g2000cwb.googlegroups.com...

Alicia

2005-09-30, 1:16 pm

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

Alicia

BJ wrote:
> Hi Alicia,
> I suffer from that when I am in a major flare. Occasionally at other times
> too. It is never an ongoing problem like it is for you. That sure must be
> tough. I don't have any suggestions. I see that others had some ideas for
> you though. I really just wanted to welcome you. I am glad you found us.
> BJ-Sk. Canada
>