Introduction

[JaneEyre9]

Hi Everyone,

I'm a new member here, though i have been reading off and on for much of this summer.

Health Background:

I was diagnosed with POTS this May, though my health issues have a much longer history. I have had MCS (Multiple Chemical Sensitivity) since 1999, IBS (Irritable Bowel Syndrome), as well as asthma, allergies, and lactose intolerance since childhood. Listed in order of disruption to my life

Personal Background:

I'm a graduate student at Case Western Reserve University in sunny (haha) Cleveland, OH. I have lived here all my life except for one semester at Wooster College. I studied biomedical engineering, and ironically have been a part of an electrophysiology research lab for the past 3 years.

Impressions:

I've been so impressed by your compassion for one another, your helpful advice, and your education level about your individual issues. I'm relieved to have found such a welcoming and caring environment. Invisible disability really is a unique challenge. It's so great to meet people who understand that.

[Sunfish]

welcome!

sorry you have reason to be here, but glad you found the forum. it's full of good info & great people to go along with it. i'm 25 with Autonomic Neuropathy, OI/POTS, & NCS with other accompanying fun - related & otherwise - as well. looking forward to getting to know you (and like you saw on the other thread, i'm very recently your neighbor & soon to be your school-mate...i'll reply on that post but very cool ...).

again,welcome!

melissa

[Ernie]

Hi,

Welcome to our little world.

You will find many friends here.

Ernie

[JaneEyre9]

Thanks Melissa and Ernie!

I forgot to put my name at the end! Oops! That's the point of an introduction, right? My name is Kristen

[MightyMouse]

Welcome--glad you found your way to our forum and I hope you find much support and info here.

I have POTS & NCS, probably resulting from Ehlers-Danlos III (hypermobility), not to be confused with "benign hypermobility". The EDS manifests itself for me in terms of very slow gut motility/gastroparesis (dx w/ IBS), reflux from the gut valves not closing well enough, and frequent joint subluxations/dislocations--yesterday I partially dislocated my knee, and did something that involved some crunching of my wrist bones. On a good note, they pop back in as easily as they pop out .

Additionally, it is believed that my vascular nerves and catecholeamines are all working perfectly--but my blood tends to pool in my lower limbs when I'm upright likely from that extra stretchy collagen in my veins and arteries, so in response, I pump out tons of norepi, my heart rate soars, my bp initially does a little dance up high and down low a few times until I run out of juice (norepi), and then the hr normalizes and my bp crashes to unreadable. Unless of course, I lie down first (which I usually do).

Nina

[Rita]

Nice to meet you under the circumstances. I have orthostatic intolerance and vasovagal syncope. I am also a mother of two, a little girl Kylee and a little boy Skyler. I hope that on this forum you get the chance to meet many new friends and learn more on your condition.

Rita s

[JaneEyre9]

Nice to meet you, Nina and Rita! Thanks for the welcome.

Nina, you brought up something I'm curious about-- a cause for your POTS. I've been wondering if there is something behind my POTS diagnosis other that just "some virus" attacking my nervous system. Did you have your diagnosis of Ehlers-Danlos III right away, or was that something your doctor investigated after pinpointing the POTS? I'm going back to Dr. Fouad on Thursday and want to make sure I cover all the bases when I ask her questions.

Thanks for any info you could give!

[mom4cem]

Welcome! Glad you are getting treatment. Please keep us updated.

[steph37822]

oops

[morgan617]

Welcome Kristen, I love your Jane Eyre name! It is one of my favorite all time books and stories. I am glad you feel welcome here and you will find lots of support and friendly folks. I NEVER get cranky, so feel free to crank at me, har har. Lately my name is ever changing, but you can call me morgan Again welcome to our little corner of the universe....

[PattiL]

Hi Kristen,

Just wanted to say Hi from one Clevelander to another! My daughter has POTS and is 19 yrs. old. Welcome to the site.

Patti

[JaneEyre9]

Mom4cem- thanks for saying hi!

Steph- Nice to meet you and thanks for the info about your background. Sounds like you have really had a rough time. I'm sorry to hear about your ankle surgeries. It sounds like you have a great attitude for recovery though! I know that water and salt are a POTSy's best friends. The exercise part i'm having a hard time with. Like everyone else, it seems, I used to be very active. Then I got knocked down and can't really get back up again. (i need to sing some Chumbawamba) I take little walks on good days, but it seems they don't do much good. As far as getting an underlying cause pinpointed, I'd prefer there wasn't anything else to uncover, but my mind sort of wants to know "why does this happen?" Also don't want to ignore anything that could be underlying. Anyway, thanks for the info!

Morgan! A Jane Eyre Buddy! I'm so glad you share my love for the book. You know, there was a musical of Jane Eyre at one time on Broadway. The songs from it were outstanding. Anyway, thanks for saying hi! Never cranky, huh? Me neither.

Patti- Glad to know there are other Clevelander's around...like Melissa said- it's a small world. Is your daughter able to go to school? Does she still live at home?

[corina]

Hi Kristen

well, I guess everything is already said, but I wanted to say hi to you and welcome you. I live in the Netherlands and I'm the proud mom of two GREAT sons. My POTS flared up after sugery, 4 years ago, but thinking back I must have had this for a much longer time.

Welcome again. You'll find all the support and help that you need here!

Corina

[BuddyLeesWife]

Welcome to the group. My husband has NCS and his twin brother has even more frequent and severe syncope so I hang out here hoping to learn something that will help them manage this set of disorders better.

My husband claims that the BEST Rochester is Orson Wells but I haven't seen that movie version. One of my favorite Jane Eyre related books is The Eyre Affair which takes a very strange (and I mean strange) twist on the original.

Good luck on your testing.

[MightyMouse]

Ah... Jane Eyre...I thought I'd give you a trivia question before I answer your EDS query:

Who is the famous actor/actress who is in the movie, Jane Eyre, but is not listed in the credits?

but now back to topic...

I was diagnosed with EDSIII after a failed spinal surgery, where the bone graft never incorporated, and eventualy collapsed. and requiring emergency surgery to repair (remove all the debris, and take a new graft from my hip.

With my spine, I have spondylosis, stenosis and scoliosis (a lateral "s" curve). My

mother, who doesn't believe she has EDS (but I know she does), has all

these too, and her c-shaped curve goes from dorsal to anterior and back again--which

causes her a great deal of pain, and causes her palpitations at times

as the curve runs in to the center of her chest. It's

really creepy to feel down her spine and lose the bony points for

several inches. She also has horrible scarring from her pregnancies,

bruising, hypermobility.

My sister has skin manifestations only (keloids, and skin healing issues). All three of us have very fair, very soft looking skin--at times it almost looks airbrushed, and this is one of the little gifts of EDS--I don't wear make up foundation most days, unless I have a pimple or something. My youngest sister has the most porcelain looking skin I've ever seen. However, both she and my mom have terrible scarring from stretch marks (very wide, very nasty big marks--each stretch mark, after healing, is at least a half inch to an inch wide or 2.5 cm for our non US readers) and the scars from surgeries (my mom's c'section scar is beyond description).

All three of us have problems with bruising. I always have a least 4 bruises on me that I have no ieda where they came from. Additionally, I get bruises from just normal pressure. For example, I like to sit on the floor, "indian" style". Where my heels touch my inner-thighs, I have bruises from the contact. My middle sister (I'm the eldest) is free of symptoms, as is my half-brother (different mom).

Yeah, I went through a very frightening year with the spinal graft collapsing. I was calm throughout, but a few months later, while recouperating, I realized how close to dying I was. If any of the bone fragments had shot inward toward the cord instead of outward, I'd probably have died, or at best, been a quadraplegic. Changed my whole view on the world. Suddenly being out of work for a year, and homebound, seemed easy.

OMG...I just realized I've written a novel. My apologies to your eyes!!! If you want to read about my non-medical life, you can check out my website. The link is in my profile

nina

[cnm1]

Hi Kristen

Welcome from another Clevelander. My daughter, Rachel, 17 has POTS. It is a small world. Have you been able to go to school full time. Rachel is looking at colleges (I have my masters from Case as well). HOw well did CAse help you with disability issues as an undergraduate? I thought it would be a tough for my daughter because the dorms are on north campus and not near many of the class rooms.

Louise

[PattiL]

Hi Kristen,

My daughter, Chrissy received her associates from Lakeland CC this summer and will be attending John Carroll this fall. She is going to try to stay on campus. Mornings are still extremely difficult for her and we thought it might be easier for her to just be able to get up and walk across the street rather than drive the 30-40 minute commute. We'll see how it goes. She's going to try and take 12 credit hours each semester to be full-time for health insurance purposes.

You mentioned that you're going back to see Dr. Fouad this week...have you had good luck with your follow-ups with her. We had a very difficult time when trying to communicate with her after the initial diagnosis. Let us in on your secret! Have you ever gone to Chelimsky at UH or is Fouad the only person you've seen so far?

Patti

[morgan617]

Nina, which version, or should I know. I'm sure I've seen them all although the Timothy Dalton one is my all time favorite because it followed the book so closely. It can't be Orson Welles, George C. Scott, William Hurt, maybe Anna Paquin? Man I can only remember Rochester!

But I digress, Kristen do you know? morganoidunno

[MightyMouse]

The first version with Orson Welles, my dear Maudry.

[morgan617]

Ah yes my dearest Nina, I believe that might Ms. Liz Taylor, ah ha....maudreytheknowerof trivia

[JaneEyre9]

Corina-- Nice to meet you. I have the same issue of wondering when my POTS actually started. My first complete fainting episode was in the fall of 04, but other symptoms have been long standing.

BuddyLeesWife-- Your husband is lucky to have someone so supportive. It touches my heart when i read posts from people who are here simply to support a loved one. As for the Eyre Affiar-- I've never heard of it! I will have to do some investigation. But something tells me if it messes with the actual Jane Eyre plot, I might raise an eyebrow.

Nina-- And now for the answer to the Jane Eyre trivia question of the day! ::drumroll:: Elizabeth Taylor (as helen)!!! Please, no applause. I looked it up on google. The only movie versions i've seen are (in order of my liking them): The A&E version with Samantha Morton (or should I say Morganomorton ) and Ciaran Hinds; the Timothy Dalton mini series; and lastly the William Hurt one from 97. Not such a fan of that last one. Looks like I have some more Eyre to watch

Thanks for the info on EDS. It sounds like you have been very lucky with the healing from your surgery under the circumstances. It's amazing when we have those moments and realize what "could have been." Really puts things in perspective. As far as my symptoms go, I've always bruised easily (almost always unexplained bruises on my legs and severe bruising from minor events) but i don't think it's as bad as you described yours to be. Just trying to rule things out right now, so it's good to know all I can about stuff like this.

Louise-- Hello! I'm glad Rachel is looking at colleges. Case is really good for tuning in to disabilities. I was not yet POTS diagnosed when I went through undergrad. My main problem was Multiple Chemical Sensitivity (due to severe mold/chemical exposures in 1999). I had trouble being in certain buildings on Case's campus that were fine for "normal" people. I would have a reaction almost as soon as i stepped in the building. (Mainly confusion/memory probs and flu like symptoms that could keep me down for days) Anyway, as Melissa has mentioned, there is a special service at Case for people with disabilities. The coordinator has disabilities herself, so she is empathetic and is an advocate for students. I had a good relationship with her. Most classes were simply moved into "safe" buildings for me (some I watched by video tape). Needless to say, there were a lot of bumps along the way, but i managed to stay full time (12 credit hours) the entire time. For Rachel, I think the hardest part would be the walking, like you said. Usually the walk to class from a dorm is about 15 minutes. I didn't live on campus, so i had a bit shorter of a walk (about 2 mintues) from the parking garage. Feel free to email or post any questions you or Rachel have. I've written a ton already!

Patti-- I think that it's a great idea for Chrissy to live at John Carroll. I had to commute about 50 minutes for all my years to Case. The 8:30am classes for my major were a nightmare-- especially in the Cleveland winter! I still don't really know how i did it. By the grace of God. Mornings are bad for me too, so i know how she feels. Just thinking about it now makes me pale!

As far as Dr. Fouad goes, after the initial diagnosis i did not have much communication with her (other than phone messages through the nurse). After two months of terribly slow improvement I had another LOC episode and went back to square one. I couldn't work or drive or do anything, so i was able to get an appointment (a week after LOC). She did the hemodynamic studies on me (a week after the visit) and my mom was the one who asked that we SEE her to talk about the results rather than just get the print out in the mail. I was too tired and sick to think about it. I'm still in the early stages of this diagnosis, so we'll see how the follow up goes. I've been out of work most of the summer, so I'm hoping to get some quality of life back eventually.

Well I think I've written quite a bit here! Sorry for the length, but i'd much prefer to write here rather than work on my thesis this afternoon.

[StaceyYount]

Who knew you guys would Love Jane Eyre too?????? I have a copy of every movie and my one with Timothy Dalton is about to wear out I have watched it sooooo many times. Just last week I watched the one with Samantha Morton and Cirian Hinds and since you guys won't laugh (like my husband does) then I watched the one with George C Scott which is one of my favorites. We are a strange group!!

Anyway welcome we are a knowledgable lot and like to learn too.I have had POTS for 9 years almost 10. Mine started after bronchitis and a virus.

Since you have worked with electrophysiologists I imagine we will ask you too.

Sorry you are here but glad you found us!

Stacey :-)

[Eillyre]

Sorry to be popping in late in the conversations, but I did want to welcome you, Jane! And a fellow Eyre reader, too! -- better and better!

Welcome to our ever increasing clan -- I'm glad you found us!

Angela

P.S. Thanks for the hint on Case! I want to go to college once I'm well enough to handle it, so I always keep my ears (or eyes, in this situation) open for possibilities!

[MightyMouse]

Yes, my dears, it is Elizabeth Taylor... Now Maudry, did you look that up too??? Are yee the knower of trivia or the looker-upper??? Either way, I bow to thee.

Nina

[JaneEyre9]

Wow, this place was made for me! A whole group of people who understand POTS and love Jane Eyre! (Not to mention all the great Cleveland folks )

Thanks for saying hi, Stacey!

Angela-- glad you are making plans for college. I didn't realize the importance of having an advocate when i first entered college. But it made all the difference in the world.