Dizziness

[Guest guest]

Joan,

I'm sorry you've had full out vertigo. That's scary stuff. I had one dizzy

episode that was very brief - just kind of " whoosh " , and I flipped, and it

was gone. Maybe I'll mention this stuff to the doctor and see if we can

expect it to go away anytime soon. In the meantime, I hope you don't get

anymore episodes!

>From: BJMaes@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Dizziness

>Date: Sun, 15 Aug 1999 20:12:14 EDT

>

>From: BJMaes@...

>

>,

>I am just the opposite, I am on 50 mgs of Imuran and 1,200 mgs Urso and I

>have had two episodes of vertigo in the last five weeks---before that I

>have

>had a few times where I was light headed but figured it was from getting

>out

>of bed too quickly or standing up to quickly---who knows, I just don't want

>to have it happen again----Joan in PA

>

>---------------------------

[Guest guest]

,

I am just the opposite, I am on 50 mgs of Imuran and 1,200 mgs Urso and I

have had two episodes of vertigo in the last five weeks---before that I have

had a few times where I was light headed but figured it was from getting out

of bed too quickly or standing up to quickly---who knows, I just don't want

to have it happen again----Joan in PA

[Guest guest]

I used to get dizzy a day or so before my period.

J

>From: KATBERCOO@...

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> onelist

>Subject: Re: [ ] Dizziness

>Date: Sun, 15 Aug 1999 21:27:02 EDT

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>From: KATBERCOO@...

>

>Dear Joan and :

>

>I've had problems with dizzy spells for a long time. Various doctors have

>attributed it to my blood sugar problems. Since I started a 'hypoglycemia'

>diet they have decreased in frequency. I've had blood sugar problems off

>and

>on since I was 15, but the prednisone really exacerbated the problem. The

>dizzy spells are pretty scary. The endocrinologist wants me to start a new

>medication for it, but I'm balking until I know how I'm going to handle the

>cyclosporine. You might consider seeing an endocrinologist to have your

>blood sugar checked.

>

>Kathy (AIH)

>Seattle area

>

>---------------------------

[Guest guest]

Dear Joan and :

I've had problems with dizzy spells for a long time. Various doctors have

attributed it to my blood sugar problems. Since I started a 'hypoglycemia'

diet they have decreased in frequency. I've had blood sugar problems off and

on since I was 15, but the prednisone really exacerbated the problem. The

dizzy spells are pretty scary. The endocrinologist wants me to start a new

medication for it, but I'm balking until I know how I'm going to handle the

cyclosporine. You might consider seeing an endocrinologist to have your

blood sugar checked.

Kathy (AIH)

Seattle area

[Guest guest]

Thanks Kathy, do you get so dizzy you get sick? Just curious, Joan

[Guest guest]

Dear Joan:

My dizzy spells usually start with a vertigo feeling followed by a sort of

'cold wash.' Then I feel like I could faint, but I never have lost

consciousness. At this stage of the game, I'll usually immediately get

something like orange juice or Gatorade to give me a quick sugar fix, then

I'll have a healthy snack as soon as I get a chance. Since dehydration gives

me the same feeling, I usually drink a lot of water afterwards too, just in

case. When they've happened to me at the grocery store, I've actually gone

to the juice isle and gotten some Gatorade and drunk some right there. Then

I'll just take it to the check out. I try to carry a Nutragrain bar or

something like that with me so get a quick sugar fix on the road if I need

one. If they happen to me on the road, I try to get home as soon as

possible. I've pulled over a few times.

I don't usually feel sick afterward (no more than usual anyway), although

sometimes I won't feel like doing much for the rest of the day afterward.

The hypoglycemia diet has really helped. I seem to have a lot less of them

now, so am inclined to think that it really is my blood sugar that's causing

them. I have read that both dizziness and vertigo are side affects of

prednisone, so that could be a factor, too.

Hope this was helpful.

Kathy (AIH)

Seattle area

[Guest guest]

Dear Jody:

I have definitely noticed an increase in motion sensitivity. I can't be a

passenger in a car unless it's 'interstate' driving. My husband gets annoyed

at me because of it sometimes. I can't tell you how many outings have been

ruined by my getting motion sick in the car. There are a lot of tree lined,

2 lane highways here in western Washington, and sometimes, even when I'm

driving, they get to me. I'm glad that you brought it up. I wondered if it

was because of the prednisone.

Kathy (AIH)

Seattle area

[Guest guest]

Kathy and Jody

There is a new movie out that I would recommend that you NOT see-its the

Blair Witch Project. It is truly made by only 2 cameras and it's like

somebody shooting a video so when they are running with the camera it becomes

too much for the audience-it has actually caused a lot of problems in the

theaters with people barfing in the isles!!! Just warning you in advance!

Susie

[Guest guest]

Hi everyone. I have a survey question for you all..

How many of you have noticed an increase sensitivity to motion. such as

car rides, rollor coasters, movies with a lot of movement in the film

ie driving scenes..???

I have noticed over the last few years that I am more and more unstable

with regards to movement. I am a major roller coaster fan and this last

time at the park I was feeling sick after most of the rides..Its a

bummer..but I also have noticed that I cant sit very close to the

screens at movies or even tolerate movies that give you the sensation

of moving in a car or plane or whatever..I remember hearing a long time

ago that this could be related to the autoimmune disease..

Jody

--- susan johnson <shireen42@...> wrote:

> From: " susan johnson " <shireen42@...>

>

> I used to get dizzy a day or so before my period.

>

> J

>

>

> >From: KATBERCOO@...

> >Reply- onelist

> > onelist

> >Subject: Re: [ ] Dizziness

> >Date: Sun, 15 Aug 1999 21:27:02 EDT

> >MIME-Version: 1.0

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> >From: KATBERCOO@...

> >

> >Dear Joan and :

> >

> >I've had problems with dizzy spells for a long

> time. Various doctors have

> >attributed it to my blood sugar problems. Since I

> started a 'hypoglycemia'

> >diet they have decreased in frequency. I've had

> blood sugar problems off

> >and

> >on since I was 15, but the prednisone really

> exacerbated the problem. The

> >dizzy spells are pretty scary. The endocrinologist

> wants me to start a new

> >medication for it, but I'm balking until I know how

> I'm going to handle the

> >cyclosporine. You might consider seeing an

> endocrinologist to have your

> >blood sugar checked.

> >

> >Kathy (AIH)

> >Seattle area

> >

> >---------------------------

[Guest guest]

Dear Jody:

I suppose it could just be the liver disease in general. I've always had

mild problems with motion sickness (like riding in the back of a big car),

but I've noticed it's much worse since the AIH. I've always been a big

rollercoaster buff too, although I haven't tried one since being sick. There

aren't any good amusement parks in this area. The closest big one is in

Idaho and is a whole days drive from where we live. We went there once, but

the big coaster was closed down that day. I have ridden a couple of log

rides and did OK. The biggest problem I had was getting my chunky butt out

of the thing once the ride was over. It was pretty embarrassing. I vowed

not to ride any more rides until I've lost a lot more weight! I've become so

darn sun sensitive lately and my joints have been bothering me so much, that

the last time there was a fair in town, I just let my husband and daughter go

themselves. I just couldn't imagine walking around that much and being in

the sun to boot. I know, I sound like a load of fun, but what can you do?

Have a good day!

Kathy (AIH)

Seattle area

[Guest guest]

Dear Susie:

Thanks for the warning. I had heard about that too. I'm not big on the

shock scary movies anyway, although I've heard that one is pretty good. My

sister sent me a home video of her walking around her new home and it made me

queasy and I couldn't watch the whole thing, so I know that that movie would

probably bother me.

Kathy (AIH)

Seattle area

[Guest guest]

Kathy, I dont think its the prednisone cuz Im not on prednisone and I

get it big time..

Jody

--- KATBERCOO@... wrote:

> From: KATBERCOO@...

>

> Dear Jody:

>

> I have definitely noticed an increase in motion

> sensitivity. I can't be a

> passenger in a car unless it's 'interstate' driving.

> My husband gets annoyed

> at me because of it sometimes. I can't tell you how

> many outings have been

> ruined by my getting motion sick in the car. There

> are a lot of tree lined,

> 2 lane highways here in western Washington, and

> sometimes, even when I'm

> driving, they get to me. I'm glad that you brought

> it up. I wondered if it

> was because of the prednisone.

>

> Kathy (AIH)

> Seattle area

>

> ---------------------------

[Guest guest]

Jody,

I have always had trouble with motion sickness, like on planes, or boats.

The only amusement park rides I can tolerate are the bumper cars and maybe

the roller coatser. I haven't been on a roller coatser for about 10 years

but had AIH then. Don't know if I could stomach it now though.

Dianne A.

[Guest guest]

Dianne, you say you had AIH ten years ago. Have you somehow miraculously

been cured or has it just gotten more tolerable?

[Guest guest]

Hi

I've had elevated liver enzymes for 17 years. I was first diagnosed with

AIH(1985), then PSC also(1996). It seems I have an overlap of both. Also

Subacute Cutaneous Lupus Erythematosus and Sjogren's Syndrome (as of 1997).

My ALT and AST came down dramatically when I started taking prednisone.

Imuran did nothing. Actigall for the PSC lowered all of my enzymes to almost

normal. I stopped taking it because of the nausea. So, my enzymes are quite

elevated.

Dianne A.

[Guest guest]

Jody,

No motion problems with me. However, when I would get dizzy, if I closed my

eyes dizziness would go away. Do you get sea sick? I do not.

J

>From: Jody Compton <compton_61@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Dizziness

>Date: Mon, 16 Aug 1999 09:14:00 -0700 (PDT)

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>From: Jody Compton <compton_61@...>

>

>Hi everyone. I have a survey question for you all..

>How many of you have noticed an increase sensitivity to motion. such as

>car rides, rollor coasters, movies with a lot of movement in the film

>ie driving scenes..???

>I have noticed over the last few years that I am more and more unstable

>with regards to movement. I am a major roller coaster fan and this last

>time at the park I was feeling sick after most of the rides..Its a

>bummer..but I also have noticed that I cant sit very close to the

>screens at movies or even tolerate movies that give you the sensation

>of moving in a car or plane or whatever..I remember hearing a long time

>ago that this could be related to the autoimmune disease..

>Jody

>

>--- susan johnson <shireen42@...> wrote:

> > From: " susan johnson " <shireen42@...>

> >

> > I used to get dizzy a day or so before my period.

> >

> > J

> >

> >

> > >From: KATBERCOO@...

> > >Reply- onelist

> > > onelist

> > >Subject: Re: [ ] Dizziness

> > >Date: Sun, 15 Aug 1999 21:27:02 EDT

> > >MIME-Version: 1.0

> > >From

> > errors-165537-5291-shireen42=hotmail.comonelist

> > Sun Aug 15

> > >18:27:13 1999

> > >Received: (qmail 3418 invoked by alias); 16 Aug

> > 1999 01:26:34 -0000

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> > >21:27:03 -0400 (EDT)

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> > >

> > >From: KATBERCOO@...

> > >

> > >Dear Joan and :

> > >

> > >I've had problems with dizzy spells for a long

> > time. Various doctors have

> > >attributed it to my blood sugar problems. Since I

> > started a 'hypoglycemia'

> > >diet they have decreased in frequency. I've had

> > blood sugar problems off

> > >and

> > >on since I was 15, but the prednisone really

> > exacerbated the problem. The

> > >dizzy spells are pretty scary. The endocrinologist

> > wants me to start a new

> > >medication for it, but I'm balking until I know how

> > I'm going to handle the

> > >cyclosporine. You might consider seeing an

> > endocrinologist to have your

> > >blood sugar checked.

> > >

> > >Kathy (AIH)

> > >Seattle area

> > >

> > >---------------------------

[Guest guest]

Dianne, i am very new to all these other liver diseases and not familiar with

the treatments etc. so please bear with me. my 10 yr old son was diagnosed

with AIH 7 years ago and has been on various doses of prednisone and imuran.

thank god his lft's are all right on target with the exception of the ast and

alt. now today's results show them to be almost norman but his platelets are

just below normal. do you or anyone else have any experience or knowledge of

why this may happen. i am hoping its just a med reaction and nothing new to

worry about. i am waiting to talk to his doc. i missed his call back this

afternoon and will talk to him tomorrow. thanks for your reply. i am new to

the group too.

[Guest guest]

SueB,

thanks for the encouragement. what made your numbers go back to normal. any

vitamins or change in lifestyle?

thanks,

[Guest guest]

,

I had a drop in platelets at one stage a while back. Questioned the doc and

she told me that the meds have a lot to do with that and not to worry about

it. I hope that is all that it is for your son too.

SueB.

----------

> From: KPY@...

> onelist

> Subject: Re: [ ] Dizziness

> Date: Tuesday, 17 August 1999 10:34

>

> From: KPY@...

>

> Dianne, i am very new to all these other liver diseases and not familiar

with

> the treatments etc. so please bear with me. my 10 yr old son was

diagnosed

> with AIH 7 years ago and has been on various doses of prednisone and

imuran.

> thank god his lft's are all right on target with the exception of the ast

and

> alt. now today's results show them to be almost norman but his platelets

are

> just below normal. do you or anyone else have any experience or

knowledge of

> why this may happen. i am hoping its just a med reaction and nothing new

to

> worry about. i am waiting to talk to his doc. i missed his call back

this

> afternoon and will talk to him tomorrow. thanks for your reply. i am

new to

> the group too.

>

> ---------------------------

[Guest guest]

Tyler who is 16 yr old and has AIH and PSC and Crohns and Rhuematoid

Arthritis also has low playlets...they have been down to 40,000 and when they

are just above 100,000 his docs are pleased...still low but an improvement

for Ty. He has had enlarged spleen in the past....but it is better....not

normal but better...

More than that I can not help you...One question...does your son bruise

easily....Ty does..He will have huge bruises and not know where they came

from or little ...very little circle bruises...I alwo have very low

playlets...35,000 and get the same bruising...so I know that its not that

these bruises are from horsing around...they just apear...The higher the

count the better he is with the bruising...

Luanne Ty's mom

[Guest guest]

Luanne, you answered several of the questions i just asked you, thanks.

Cason does show bruises but he plays every sport under the sun and with great

enthuiasm so i don't really think they are abnormal. He also has a go-cart

which bounces him around some and may also bang him up. I am fortunate that

he is so active and pray that he remains that way. I am also very grateful

that his LFT's are normal with the exception of the AST & ALT. thanks for

the info on the platelets. still waiting on the docs explanation. What area

are you in. I am only curious to know in case i might want a second opinion

on the treatment with prednisone. you mentioned the other meds, which i may

ask his doc about.

Thanks, and hang in there. Good luck today too.

[Guest guest]

,

No, nothing changed it just happened. My doctor thinks I am great, she gets

to see all sorts of things with my case, things she has never encountered

before. We often laugh about her being so enthusiastic about my case, and

me just wanting to be normal.

SueB.

----------

> From: KPY@...

> onelist

> Subject: Re: [ ] Dizziness

> Date: Tuesday, 17 August 1999 22:52

>

> From: KPY@...

>

> SueB,

> thanks for the encouragement. what made your numbers go back to normal.

any

> vitamins or change in lifestyle?

> thanks,

>

> ---------------------------

[Guest guest]

Thanks Kathy,

I thought maybe it might have something to do with my sugar levels. I was

surprised to find out my doctor isn't monitoring that since I've been on

Pred and Imuran. Does eating less sugar help? Thanks for your advice. I'll

look into it for sure.

>From: KATBERCOO@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Dizziness

>Date: Sun, 15 Aug 1999 21:27:02 EDT

>

>From: KATBERCOO@...

>

>Dear Joan and :

>

>I've had problems with dizzy spells for a long time. Various doctors have

>attributed it to my blood sugar problems. Since I started a 'hypoglycemia'

>diet they have decreased in frequency. I've had blood sugar problems off

>and

>on since I was 15, but the prednisone really exacerbated the problem. The

>dizzy spells are pretty scary. The endocrinologist wants me to start a new

>medication for it, but I'm balking until I know how I'm going to handle the

>cyclosporine. You might consider seeing an endocrinologist to have your

>blood sugar checked.

>

>Kathy (AIH)

>Seattle area

>

>---------------------------

[Guest guest]

Dear :

Yes, eating less sugar helps. One main rule of thumb if you suspect that you

have blood sugar problems, is to never eat something with a lot of sugar in

it by itself. I have to eat about every 3 hours so have a pretty strict

schedule of what to eat when. I have complete freedom within this schedule,

but choose not to eat a lot of sweets. I really think that it has helped.

If you are going to eat a carbohydrate, or sugar snack; make sure you eat

some protein with it. For example, if you eat an apple as a snack, have a

piece of cheese with it. The apple will cause your blood sugar to rise, and

the protein will keep it from plummeting back down.

You should check with your doctor right away if you suspect you have blood

sugar problems. They can do a test that indicates what your levels have been

for the last 3 months.

Good luck! Take care!

Kathy (AIH)

Seattle area

[Guest guest]

Dear Kathy,

Thanks so much for your advice! I will definitely start eating protein with

any sugar snacks. I'm trying to make note of when I get most dizzy. Today

it was after a granola bar, which was quite sugary. I had no idea about any

of this. It really helps me out a lot.

Actually, I asked my specialist (during our brief phone consultation) if I

should be concerned about my dizziness, and told her I'd been having it for

the past two weeks. She said a flat " no, dizziness is not indicative of

anything " . I pretty much expected that reaction. I'm not too worried

because it's not crazy bad, but I am eager to try anything that decreases

it...so, thank you again!

>From: KATBERCOO@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Dizziness

>Date: Thu, 19 Aug 1999 14:21:09 EDT

>

>From: KATBERCOO@...

>

>Dear :

>

>Yes, eating less sugar helps. One main rule of thumb if you suspect that

>you

>have blood sugar problems, is to never eat something with a lot of sugar in

>it by itself. I have to eat about every 3 hours so have a pretty strict

>schedule of what to eat when. I have complete freedom within this

>schedule,

>but choose not to eat a lot of sweets. I really think that it has helped.

>

>If you are going to eat a carbohydrate, or sugar snack; make sure you eat

>some protein with it. For example, if you eat an apple as a snack, have a

>piece of cheese with it. The apple will cause your blood sugar to rise,

>and

>the protein will keep it from plummeting back down.

>

>You should check with your doctor right away if you suspect you have blood

>sugar problems. They can do a test that indicates what your levels have

>been

>for the last 3 months.

>

>Good luck! Take care!

>

>Kathy (AIH)

>Seattle area

>

>---------------------------