ericajay

i teach first grade, and used to teach kindergarten. i have to remind myself to sit, and have a rolling chair that really helps. I have the classroom set up so I can roll around to tables while the kids are working- it's been a lifesaver. otherwise, i have trouble breathing when i am standing and talking for too long, and I start to feel really crabby. The older the kids are the easier- with the young ones, it was impossible for me to get down to tie shoes and zip coats as many times as I needed to, and it seemed unfair to talk to them from standing position- I always want to be on their level. Now, the older kids understand that I can't get up and down, and will form a line for zipping so that I can do it all at once. No matter what, though, I am always exhausted, and the brain fog comes and goes. Coffee is my best friend. I don't schedule meetings for the morning, because I'm not good in the morning. I take days off to rest and plan as I need to. It's definately not the ideal job for having POTS, but nothing is...

Just a tip- I just bought a medic alert bracelet from Lauren's Hope website. It came in the mail today and it is beautiful! They have so many options, all different kinds that have the medical stuff on the inside of the wrist, so it is more discreet. I feel better having one on- I always worry about passing out when I am out somewhere alone. I went on vacation last week and on my flight back was feeling really POTSy, and worried that I would pass out. And then, a man on my plane a few rows back from me DID pass out, and there was so much commotion about it, I just kept thinking- wow, that could be me. It embarrassed me just imagining the panic and confusion...when I got home, I ordered a bracelet (just to be safe- and it always feels good to have new jewelry). Check out the website http://www.laurenshope.com/ erica

my mom came across this article in her newspaper today. she cut it out and passed it along to her friends. great to see POTS in general news, it helps to have accessible stories for people to raise awareness of POTS. http://www.heraldtribune.com/article/20100...the-specialists

So, I just went to a new doctor yesterday, who is pretty convinced that I have Marfan syndrome. I don't know anything about it- but I guess show some "Marfanoid" traits, like the long wingspan, tall and slim, and the extra flexible joints...and I also have a strong murmur which he was concerned about, and he thinks it might be MVP. I'll find out more next week when I go for an Echo. Does anyone know anything about Marfan? Also, I went and had a IV saline infusion this morning, and felt great all day- almost no palps, which is unheard of for me. I had great energy all day, and was so clear headed- after the first bag of saline, I felt like Rip Van Winkle, coming to. Does anyone else feel like this after saline? How long does it last? Although I feel great, I am wondering if it's bad timing to not have any palps if I am going for an Echo- I hate it when I make a Dr. appointment when I feel my worst, and then feel great on the appointment day and am hoping it doesn't seem like I'm making it up.

I often have this disconnected feeling- mostly in the morning. I am a teacher, and sometimes reach the afternoon before I suddenly snap out of it, and feel like- wow, what did I teach all morning?! Then it really freaks me out...I sometimes don't remember the drive to school, or have to think really hard about it to remember. It makes me feel like my life is out of control... hang in there!

I am always trying to figure out when and how to talk about it. Lately I feel like I'm talking about it more and more, because I am feeling worse and need to ask people for help more often. Once I not that I'm in the middle of explaining myself, I find that I am wishing that I had kept people up to date more often, so as not to start at the beginning all the time- it's so much easier to have someone who gets it, who I can just say "I'm having a POTSy day" and they know what I mean. It definately is a two-sided coin, though- though it helps to have people know what my illness is, I also hate it when people assume that I can't do something- or act like I'm an invalid- I get to decide what I can and can't do. But I feel different about it every day- and I appreciate my friends who won't ask how I am unless I want them too, and will let me pretend I am fine when I need to, and will support me when I can't pretend.

Hi all It's been months since I have seen my POTS specialist, and I often avoid going to him because it seems like florinef is his only solution ( and i just dont want to be on that). In thise last 6 months, i had been feeling better, but am now in a big slump. I made an appointment, but don't really know how to approach it- I don't know what I need or want. I have a POTS diagnosis. Lately, I have had terrible shortness of breath, nausea, and almost constant palpitations. All of you doctor visit pros out there: what do you think I should ask my doctor, or talk about? What's the best way to get some proper help out of a short appointment ? THANKS! erica

i also get palps for extended periods of time- sometimes i will feel that way for most of the day, and it is exhausting. it is so frustrating! someone suggested to me recently to try to make yourself sneeze to "reset" things- and i think it works.

Thanks, everybody. To respond to some of the things mentioned- I don't have any other conditions other than POTS (that I know about). I have been resisting taking fludrocortisine because I hear a lot about it having more side affects than desirable results. But I think it is reaching a point where I need to try something. And I am not convinced that there is not something more than POTS going on even though there are a million POTS related issues. I am due for a new workup- I lately have been having some digestive issues as well. I don't know what my BP is, but I do keep track of my HR- yesterday when I was feeling really short of breath I sat down for a bit and my HR was 190 even after sitting for 10 minutes. (I teach first grade, so finding 10 minutes to sit is like heaven). My school nurse encouraged me to drink a lot of water quickly to bring my HR down sooner, but it is so hard to drink with that "suffocating" feeling. I also get palpitations when I breath deeply, or try to. What does everyone know about Mitral Valve Prolapse? I'd never heard of that until the other day. erica

I am stressed...but was feeling this way before I got stressed this week.. for about a week now i've been feeling really short of breath, and worrying about it. I think I manage stress really well...I sometimes am able to do more under stress because I forget how lousy I feel. My breathing right now is really shallow, and wide open mouth breathing if I'm not thinking about it and trying to concentrate on it. If I drink water and take a big gulp, I have to take a panicky breath as soon as I swallow because I feel like I'm totally out of air.

do you even feel out of breath when you're not doing anything? I'd understand it if I was walking or moving, but I even this week feel winded just sitting down.

Hi everyone, thanks for all of your thoughtful posts. I am new here, I was diagnosed with POTS almost 2 years ago, and am seeking you all out now as I have been in a big slump for a few weeks now. I've been managing fairly well, but have occasional days/weeks of feeling lousy and am in probably the worst slump so far. My main complaint is that I feel like I am never getting a full enough breath, or enough oxygen. I find myself catching my breath between words much sooner than I feel like I should have too when I'm talking. And no matter how hard I try, I don't feel like I am filling my lungs- like I never get a satisfying breath. Does anyone else have this problem with POTS? Should I be more concerned about this than just annoyed? I feel like there is so much I don't understand about POTS- it's so frustrating and confusing sometimes. Thank you! erica