RE: Introducing Myself, re Hypermobile EDS, OI, POTS, ADHD, LD

[Guest guest]

In a message dated 3/17/2004 10:04:46 AM Eastern Standard Time,

I am trying to figure out which HEDS EDSrs experience fainting, low

blood pressure(lightheadedness, dizzyness) OI or POTS. Has anyone come

up with a determining factor? Any suggestions anyone?

Hi,

I am involved with the research that Dr. Goldstein is doing at NIH on POTS.

At the time I was the first EDSer involved. They were able to prove with their

testing that one of the factors involved was the strecthiness of our veins

which had been sucpected for a long time. That causes such extreme blood pooling

then in the legs and arms. That is not the only reason for the syncope,

however. Another factor in my case was sympathadrenal imbalance. There is

evidentally too much adreneline at times.

[Guest guest]

RE: Introducing Myself, re Hypermobile EDS, OI, POTS, ADHD, LD

I am trying to figure out which HEDS EDSrs experience fainting, low

blood pressure(lightheadedness, dizzyness) OI or POTS. Has anyone come

up with a determining factor? Any suggestions anyone?

Hi Bernadette -

I have symptoms of POTs/OI/ etc. I posted a list of the symptoms that another

EDSer found. I had 36 symptoms for the list. I am now going to an

electrophysiologist in May for an initial appt.

I have the low blood pressure (usually 90-100/60-70), I get lightheaded and/or

start to black out when standing too quickly, plus the IBS, memory problems,

etc...

My daughter, 15.5 years old has low blood pressure but hasn't told me of any

problems with getting lightheaded or starting to black out.

Bonnie

EDS variant

Milwaukee WI area

HOpe this helps.

[Guest guest]

RE: Introducing Myself, re Hypermobile EDS, OI, POTS, ADHD, LD

I am trying to figure out which HEDS EDSrs experience fainting, low

blood pressure(lightheadedness, dizzyness) OI or POTS. Has anyone come

up with a determining factor? Any suggestions anyone?

Hi Bernadette -

I have symptoms of POTs/OI/ etc. I posted a list of the symptoms that another

EDSer found. I had 36 symptoms for the list. I am now going to an

electrophysiologist in May for an initial appt.

I have the low blood pressure (usually 90-100/60-70), I get lightheaded and/or

start to black out when standing too quickly, plus the IBS, memory problems,

etc...

My daughter, 15.5 years old has low blood pressure but hasn't told me of any

problems with getting lightheaded or starting to black out.

Bonnie

EDS variant

Milwaukee WI area

HOpe this helps.

[Guest guest]

Hi Bernadette,

I'm one of the EDSers who has the light-headedness, fainting, low BP,

tachycardia and palpitations. I was diagnosed with neurogenically

mediated vasodepressor syncope (a form of OI) about 7 or 8 years ago,

but recently I've learned more about POTS and wonder if I fall in

that category too, I need to check with my cardio next time I see

him). I'm fairly sure I'm HEDS (the rheum who diagnosed me knew only

enough about EDS to diagnosis me and was using old nosology and tried

to tell me I have type X, but I'm 99.9% sure I'm HEDS... waiting for

a new specialist to make sure). I'm happy to try and answer any

questions you have (on or off list). I do fall into the Marfan body-

type (tall and thin), but I don't know if that has anything to do

with anything. I'm new to all this too.

>

> I am trying to figure out which HEDS EDSrs experience fainting, low

> blood pressure(lightheadedness, dizzyness) OI or POTS. Has anyone

come

> up with a determining factor? Any suggestions anyone? I am

beginning

> to wonder

> r if my dtr. has an overlap with Marfans Syndrome.

[Guest guest]

Hi Bernadette,

I'm one of the EDSers who has the light-headedness, fainting, low BP,

tachycardia and palpitations. I was diagnosed with neurogenically

mediated vasodepressor syncope (a form of OI) about 7 or 8 years ago,

but recently I've learned more about POTS and wonder if I fall in

that category too, I need to check with my cardio next time I see

him). I'm fairly sure I'm HEDS (the rheum who diagnosed me knew only

enough about EDS to diagnosis me and was using old nosology and tried

to tell me I have type X, but I'm 99.9% sure I'm HEDS... waiting for

a new specialist to make sure). I'm happy to try and answer any

questions you have (on or off list). I do fall into the Marfan body-

type (tall and thin), but I don't know if that has anything to do

with anything. I'm new to all this too.

>

> I am trying to figure out which HEDS EDSrs experience fainting, low

> blood pressure(lightheadedness, dizzyness) OI or POTS. Has anyone

come

> up with a determining factor? Any suggestions anyone? I am

beginning

> to wonder

> r if my dtr. has an overlap with Marfans Syndrome.

[Guest guest]

Hi Bernadette,

I'm one of the EDSers who has the light-headedness, fainting, low BP,

tachycardia and palpitations. I was diagnosed with neurogenically

mediated vasodepressor syncope (a form of OI) about 7 or 8 years ago,

but recently I've learned more about POTS and wonder if I fall in

that category too, I need to check with my cardio next time I see

him). I'm fairly sure I'm HEDS (the rheum who diagnosed me knew only

enough about EDS to diagnosis me and was using old nosology and tried

to tell me I have type X, but I'm 99.9% sure I'm HEDS... waiting for

a new specialist to make sure). I'm happy to try and answer any

questions you have (on or off list). I do fall into the Marfan body-

type (tall and thin), but I don't know if that has anything to do

with anything. I'm new to all this too.

>

> I am trying to figure out which HEDS EDSrs experience fainting, low

> blood pressure(lightheadedness, dizzyness) OI or POTS. Has anyone

come

> up with a determining factor? Any suggestions anyone? I am

beginning

> to wonder

> r if my dtr. has an overlap with Marfans Syndrome.

[Guest guest]

No, there are LOTS on the list who have POTS. I forwarded you email to my

Sis (adopted sister of choice), (Lonestar Rose). She the one that has

all the POTS info! By the way, there are articles from Dr. Grubb on the

home page of CEDA, under articles I think. You may want to take a look. I

may also have some here at home that Sis has sent to me. Do you want them?

I can email them to you privately if you wish. Just let me know your email

addy. Mine (offlist) is llchriste@....

Love Lana

[Guest guest]

RE: Re: Introducing Myself, re Hypermobile EDS, OI,

POTS, ADHD, LD

* Bernie, I found these emails from on the EDSers list.

You may want to

take a look at the websites she lists. Hope it helps. Oh, by the way,

I

talked to her tonight. She's still in Hawaii, and she said to say Aloha

to

everyone! :-) Lucky ducky!

Love Lana

Lana: Thanks for the info. I will read the sites.

Bernie, Toronto, Canada, HEDS, OI, POTS

[Guest guest]

RE: Re: Introducing Myself, re Hypermobile EDS, OI,

POTS, ADHD, LD

* Bernie, I found these emails from on the EDSers list.

You may want to

take a look at the websites she lists. Hope it helps. Oh, by the way,

I

talked to her tonight. She's still in Hawaii, and she said to say Aloha

to

everyone! :-) Lucky ducky!

Love Lana

Lana: Thanks for the info. I will read the sites.

Bernie, Toronto, Canada, HEDS, OI, POTS

[Guest guest]

I'm glad you got some good from them, Bernie. I've taken the opportunity to

send you some other things to your private email, that Sis has sent to me.

I'm not sure if it will be repeat or not, but thought you should have them.

They are safe to open, but they are adobe files (.pdf) If you don't have

adobe on your computer, you can download one for free at this site:

www.adobe.com/products/acrobat/readstep2.html

Love Lana

Re: Introducing Myself, re Hypermobile EDS, OI, POTS,

ADHD, LD

> Lana: Thanks for the info. I will read the sites.

> Bernie, Toronto, Canada, HEDS, OI, POTS

You're very welcome, Bernie, I hope there's some info there that will

be useful to you! I did tell Sis about you, and she will probably

email you when she gets back. Also, I think did tell you that

she has POTS also, so she would be a great reference for you as well!

As far as ADHD goes, do you have specific questions regarding that??

I work at Girls and Boys Town and we have books for ADHD - are you

referring to adult or child?? We have lots of books that may help

with ADHD & LD for children of all ages. If it IS for a child, and

you are interested, I can get specific titles for you, or you could

go to https://www.girlsandboystown.org/store/search.asp and type in

ADHD in the search box and it will show you what we have for ADHD. If

you have more specific questions, you can call me at work at 800-282-

6657 and ask for Lana. Don't order from the website, if you're

interested in anything, I will order it for you with my 15% discount,

OK? Just let me know! I could order it and have it sent directly to

you in a matter of minutes.

Love Lana

To learn more about EDS, visit our website: http://www.ceda.ca

[Guest guest]

Hi Barb:

Sorry for the late reply but my computer skills are severely lacking.

Marit has not been skin tested for Marfans Syndrome. The geneticist we

saw was a dud..did not diagnose the HEDS so I don't trust her judgement

on the Marfans issue. Marit's echocardiogram was normal for valve

function but diameter of aorta was not provided on consult report of

Can. Cardiologist. He did not think she has Marfans. She does not have

webbing of fingers but she has very long toes like my husbands and

longish fingers. Her arm span is actually 1 " shorter than her height,

5'10.5 " and she is thin with a convex chest (i.e pidgeon chest). The

Dexedrine she has to take to function at school strongly decreases her

appetite but over summer she always puts on wt. No doubt we and the

docs should be watching her closely. I suspect Marfans folks often have

LD and/or focus, concentration problems, low IQ or am I incorrect on

that one. My family does not have Marfans but my husband is adopted so

we can't tap that area. His two children from 1st marriage are not

Marfanoid. Dr. Grubb did bring it up in his discussion and noted Marit

should have an echocardiogram each year and one half so no doubt he has

uncertainty also..something we just have to live with for now. I would

be a lot more worried if she had large veins in her legs which she does

not at present, and yet?????

Dr. Grubb was very honest and we truly appreciated that. He has a

presence that is difficult to describe..Patience and empathy and yet it

is more than that. He doesn't put up the protective professional walls

that doctors and all of us, do so instinctively.

Say a prayer that we have courage during this time of " wondering " . Best

regards, Bernie from To

Re: Introducing Myself, re Hypermobile EDS, OI, POTS,

ADHD, LD

Welcome, Bernie!

> I am a 50ish parent with a 17 yr. old dtr. diagnosed in Jan, 2004

with

> Hypermobile Type EDS II ,Orthostatic Intolerance, POTS, and neuropathy

> by Dr. Blair Grubb in Toledo Ohio.

From everything I have heard, Dr. Grubb is a great one to work with.

(Lonestar) on this list is an excellent resource for info on POTS/OI

info.

I have had mild Orthostatic Intolerance since I was 15, but it's well

under

control these days.

> When I read of the type and amt.of pain many of you with Hypermobile

EDS

> endure it frightens me re my dtr's prognosis. She already has lots of

> distended veins in the arches of her feet and a marfanoid habitus.

Did the actually test for Marfan's as well?

-Barb

To learn more about EDS, visit our website: http://www.ceda.ca

_____

[Guest guest]

Hey Bonnie, me too for my husband, Larry.

Thanks, S.

RE: Re: Introducing Myself, re Hypermobile EDS, OI,

POTS, ADHD, LD

>

> Bernadette - is your daughter considered to be the " quiet type " of ADD?

I was diagnosed with the quiet type of ADD a year ago at age 47.... Any good

links you have found or books on ADD?

>

> I haven't tried any meds for it yet, but am ready to!

>

> You can email me off list at

> bonnieh4455@...

>

>

>

[Guest guest]

Hi again, Bernie,

Both of my kids have been diagnosed with HEDS. As a standard part of their

treatment they now have annual cardiology assessments done by Dr. Muesewe

(in Toronto). He follows several children with EDS. The purpose is to

monitor for changes - especially during times of rapid growth which seems to

be the only way my kids grow (e.g. 2 inches in 2 weeks)

C.

Guelph , Onatrio

[Guest guest]

RE: Re: Introducing Myself, re Hypermobile EDS, OI, POTS,

ADHD, LD

Bernadette - is your daughter considered to be the " quiet type " of ADD? I was

diagnosed with the quiet type of ADD a year ago at age 47.... Any good links you

have found or books on ADD?

I haven't tried any meds for it yet, but am ready to!

You can email me off list at

bonnieh4455@...

[Guest guest]

THanks ! Good to know...

RE: Re: Introducing Myself, re Hypermobile EDS, OI,

POTS, ADHD, LD

>

> Bernadette - is your daughter considered to be the " quiet type " of ADD?

I was diagnosed with the quiet type of ADD a year ago at age 47.... Any good

links you have found or books on ADD?

>

> I haven't tried any meds for it yet, but am ready to!

>

> You can email me off list at

> bonnieh4455@...

>

>

>

[Guest guest]

I was diagnosed with the quiet type of ADD a year ago at age 47.... Any good

links you have found or books on ADD?

I haven't tried any meds for it yet, but am ready to!

Bonnie, I'm interested.what is the " quiet " type of ADD?

Love Lana

http://us.adserver.yahoo.com/l?M=280690.4720426.5874768.4317406/D=egroupweb

/S=:HM/A=1969607/rand=107446416>

[Guest guest]

That would be attention defecit dosorder without the hyperactivity - right?

That's what my has.

[Guest guest]

That would be attention defecit dosorder without the hyperactivity - right?

That's what my has.

[Guest guest]

> That would be attention defecit dosorder without the hyperactivity -

right?

> That's what my has.

>

>

Oh, OK, that makes sense! I would say that Mike has that NOW instead

of ADHD, but I KNOW that as a child, and when we were first married,

he definately had the hyperactivity! I think the only reason he isn't

as " active " now as then, is that he's 57, and has bad knees.

Otherwise, he'd probably be playing basketball, etc. When we moved

into our house, one of the first things I got him was a basketball

hoop - he used to drive me NUTS playing basketball in the house, by

throwing a nerf ball through the curtain rods. I think he's broken

about 10 bells (I have a bell collection of over 200 bells) and I

can't even count how many dishes and glasses! LOL! Thank God he

kinda grew out of it by the time I began my angel collection, or he

might be an angel now TOO! HA!! just kidding!

Love Lana

[Guest guest]

> That would be attention defecit dosorder without the hyperactivity -

right?

> That's what my has.

>

>

Oh, OK, that makes sense! I would say that Mike has that NOW instead

of ADHD, but I KNOW that as a child, and when we were first married,

he definately had the hyperactivity! I think the only reason he isn't

as " active " now as then, is that he's 57, and has bad knees.

Otherwise, he'd probably be playing basketball, etc. When we moved

into our house, one of the first things I got him was a basketball

hoop - he used to drive me NUTS playing basketball in the house, by

throwing a nerf ball through the curtain rods. I think he's broken

about 10 bells (I have a bell collection of over 200 bells) and I

can't even count how many dishes and glasses! LOL! Thank God he

kinda grew out of it by the time I began my angel collection, or he

might be an angel now TOO! HA!! just kidding!

Love Lana

[Guest guest]

> That would be attention defecit dosorder without the hyperactivity -

right?

> That's what my has.

>

>

Oh, OK, that makes sense! I would say that Mike has that NOW instead

of ADHD, but I KNOW that as a child, and when we were first married,

he definately had the hyperactivity! I think the only reason he isn't

as " active " now as then, is that he's 57, and has bad knees.

Otherwise, he'd probably be playing basketball, etc. When we moved

into our house, one of the first things I got him was a basketball

hoop - he used to drive me NUTS playing basketball in the house, by

throwing a nerf ball through the curtain rods. I think he's broken

about 10 bells (I have a bell collection of over 200 bells) and I

can't even count how many dishes and glasses! LOL! Thank God he

kinda grew out of it by the time I began my angel collection, or he

might be an angel now TOO! HA!! just kidding!

Love Lana

[Guest guest]

oh, that would make me mad. Breaking your collection! Shame on him!

[Guest guest]

oh, that would make me mad. Breaking your collection! Shame on him!

[Guest guest]

oh, that would make me mad. Breaking your collection! Shame on him!

[Guest guest]

> oh, that would make me mad. Breaking your collection! Shame on

him!

>

Well it did make me mad at first, but then I started getting used to

it, and would yell at him when he would get antsy to go do something

that wouldn't hurt my stuff! LOL! When we got the house, it was

better because he could 'play' outside! LOL! But now that his knees

are so bad, he finds he can get rid of the antsy feeling by sitting

at the computer and playing games. Much better for me and my

collections!