By Dawn S on Thursday, June 29, 2000 - 06:39 am:

Hi, I am new to message boards and not sure how to use them, so i will leave my email address.
When i saw hypotension as one of the symptoms of EDS I could hardly beleive it. Has anyone out there ever experienced this. My son has just been referred to a Geneticists and has an appointment for Oct. and is yet to be diagnosed. My concern with the hypotension, for years my daughter has been passing out and is on medication for it but has never been diagnosed with anything. She is 17 and is going in Friday for her second herrina operation, she is hypoglycemica and has raynounds. Is any of this related to EDS or Marfan's. MY email is archery@buckpole.com it would be such a releif to finally have some answers. Thanks

By jude on Sunday, July 02, 2000 - 09:08 pm:

Hi Dawn. Can't say whether the hypotension is connected to the hms or not but I have had low BP for as long as I can remember and maybe their is a connection. Anyone else know whether this is a connection or a coincidence?

By Faye on Saturday, August 05, 2000 - 02:22 am:

I have EDS and have had orthostatic hypotension all my life. I never knew that it was connected to EDS until I read about it recently in a book about EDS.

By Lynn on Saturday, August 05, 2000 - 05:44 am:

Faye- I never knew there were any books about EDS. Do you remember the title and authors? Was it a recent book (that is, did you consider it reasonably up-to-date)? If I could give a copy to my daughter's pediatrician, he'd be more willing to read and believe than when I say "I saw on the Internet..." Thanks! Lynn

By Michaela on Tuesday, August 08, 2000 - 05:48 pm:

I did type a long message the other day, but it didn't post.. sigh..
I have low BP usually, around 98/60. Low enough to give me white outs if I stand up from a crouch etc.
But recently it's dropped down to 90/60, so I'm really suffereing from OH pretty badly at the moment.
I think it makes sense, when you read the lit on OH. The believe it has to do with blood pooling in the legs, and is more prevalent in younger people because of softer stretchier blood vessals.
I do want to know if this is my cause. Because I've also been having a lot of fluid loss in the form of various flu like symptoms.

By Faye on Tuesday, August 22, 2000 - 03:10 am:

Hi Lynn,
I have two books on EDS: Ehlers-Danlos Syndrome: Medical and Practical Information - by LindaLee Massoud - Published in the United States of America by: SignQuest Publishers, PO Box 7101, Flint,Ml 48507-0101. The e-mail address: massoudb@mail.tir.com
That book mentions Ortho-static hypo-tension (on page 72)

The other book is The Management of Ehlers-Danlos Syndrome Published by the Ehlers-Danlos Support Group, 1 Chandler Close, Richmond, North Yorks. DL 10 5QQ, England, U.K. e-mail: EDS_UK@compuserve.com

By Lynn on Tuesday, August 22, 2000 - 02:38 pm:

Hi Faye, Thanks so much for the book information. I'll contact Linda Lee Massoud about her book now and maybe I can see about getting the UK book over here. I've already visited at least one EDS-UK web site (I think it's this support group), but if it's not the right one I do remember that they had links to many other sites. Thanks again, Lynn

By Rae on Sunday, November 05, 2000 - 09:23 am:

I have been diagnosed with EDS. Part of the diagnosis was the orthostatic hypotension and raynauds. I was put on BP meds. and I wear compression hose. It has made all the difference. I also eat a lot of salt and drink sports drinks.
I rarely black out now. I'm warmer and I have more energy.

By Barbara on Monday, January 15, 2001 - 09:46 am:

A recent study showed a link between EDS, Chronic Fatigue Syndrome, and Orthostatic Intolerance (hypotension). This study was printed in the second issue of EDS Today. http://www.uggen.net/edstoday/ The study suggests that people with EDS are prone to hypotension because of venous pooling due to lax blood vessels.

I have both EDS and Hypotension/Orthostatic Intolerance and experienced symptoms of Chronic Fatigue Syndrome as a teen.

By Emilie on Monday, March 19, 2001 - 08:32 am:

I also have very low BP (80/50) and Raynaud's. I didn't know these were symptoms of EDS. I have very very flexible joints and have been referred to a physician for EDS. Is Raynaud's a symptom?

By Lucy on Sunday, June 17, 2001 - 04:39 pm:

I have low BP too and Raynauds. I haven't been taking meds for the low BP but I do have "dizzy spells" and crave chocolate like no tomorrow! Can someone explain what Orthostatic Hypotension is? Thanks - Lucy

By Jinn on Monday, August 20, 2001 - 09:56 pm:

I read your posts and am curious
what my symptoms sound like to you based on recent post ..

------------------------------------------------

seriously , my joints are subluxing so badly i can barely leave the house or wear clothing

i'm in the US and i can't even leave becasue of it it's thats ridiculous

and this is from someone who has literally had them almsot 100 % through rehab in the past ( i know how to get them in )

so i am wondering if there any docs with cheap accommodation round them i could go to that are good

i was going to faber as you know and everything was going fine until i came back here and i started subluxing badly due to heat

my left shoulder after being strong literally fell apart after 9 th treament and i tried getting injections in ribs which only seemed to make it worse

i have managed to improve a bit but i still could barely wear clothing or go ouside without feeling like i am going to cave in so i decided to investigate why the heat could be having such an effect..

when i did i started thinking about an underlying metabloic disorder that was causing me to sweat too much

the main that came up was sodium as it controls how much water is released

so i took it

guess what ?

it not only helped my pn , gasritis but it had my shoulders feeling like cast iron and i was able to walk outside in 90 plus heat, with at-shirt on, nothing short of miracle believe me

unfortauntley after day 4 i started getting pains
, chronic fatigue , dizziness etc

and iwent into emergency because i thought my pains where iN my heart

it turned out according to them , though it remains questionably given the blood test , that i have pancirits

so i can't take the salt too ( the only thing ) that helped to stablise myself

i aso found that the gluscose combined with saLt helped immenesly and more lately caffine seems to help too

although this all reads like good mystery it still leaves me stuck here trapped

so i am thinking once more about prolo , i have nothing against faber, he did get results , but it also seems like he may if casued my left shoulder to possible start winging again and becoem wore than it was when i went to see him .

Personally i would rather try someone else who might know the body anatomy / and be able to figure out how to tackle this , Faber seemed to pay to much emphasis on Kinesiolog to determine how and where to inject and i neer flet comfortable with it ( eps as one area would be good one week , or fine and bad in another 2wks )

i am in the midwest and am kind of restricted but if i can find somewhere cheap to stay and good therpaist i would be willing to travel literally anywhere

so far wheaton is the best i can really come up with round the midwest but i can't see anwhere cheap nearby i could stay , hence the question at the start.

hauser is possibility but i still have knightmares about the althe problems i go after i went to him so i am still pretty unsure about him


well thats it

i don;t know what the hell is going to happen or if my insurancw will pay for this , but i am desperate and stuck in foreign land

if any one has any revelations they wish to share, you know where to find me..

by the way no recommendations for djuric ( i went to him and found him to be as helpful as most of the doctors who told me to just accpet this )

peace to all

Jinn

By jennieapter on Saturday, August 23, 2003 - 12:07 pm:

wow. I just was told i have hypermobility. i am often light headed, have very low b.p, low energy. But my doc. didn't tell me about any medication. what's worked for you all? He told me to eat more salt and wear compression stockings. Can you help with any other treatment tips? PlEASE!

thanks, j