misstraci

issie...... that's awesome!!! let us know what you hear back

yay you guys are all so awesome! Claire..... that is neat. I'm glad you have connections and have already started on your own mission with something like this. Rama.... good idea, but I've never heard of yellow wiggle..... what/who is that? thanks everyone else, this would be awesome to see dysautonomia in the news, tv, media, whatever, just some attention, some dr's attention and all that.

So, I was reading (only partially because I can't seem to focus) Naomi's post about "Why are doctors like this" and it got me to revisiting the idea of getting our illness out there and bringing attention to it. I think someone posted awhile back about emailing 'the doctors' show or Dr. Oz. I would LOVE LOVE LOVE if they would devote a show or segment to dysautonomia and get some people who really know their stuff to talk about it and get some awareness, maybe some answers for some people, etc etc. Has anyone for real ever emailed these kinds of shows with the idea of putting us on there?!

thanks guys! dani, i didn't know that

I've recently (over the past six months or so) gotten to the point where I can't drive and if I do it's horrible and terrifying. My two questions are 1. what symptoms keep you from driving and/or make it difficult? 2. what are some tips or tricks to be able to drive or at least make it be more comfortable? My Symptoms while driving are: extreme lightheadedness, fading out feeling, dark vision, head spin, "seizurey" feelings, adrenaline surges. thanks Traci

mine is also low!! hmmmm

good luck, let us know how its going later

Wow, so, I guess it's not just me! Thanks for all your responses. I've just always wondered if something else was going on with my body since I felt terrible sitting as well as standing, so basically, all the time. I guess pots really can cause it in any position. Hope you all feel better sooner than later and me too

It's sad that some people are ignorant enough to do something like snicker or make comments in public like that. It's one thing if they said it to someone in the car on the way home from the restaurant or something. I'm happy for you that you got one! I hope it saves your pretty head from getting hurt and wear it out with your friends If it's the running joke, laugh at it with them!!!

I've always kept a little monthly calendar where i write "P" for those days of the month and when i got sick, i still continued to write my "P"s but now, I also write down days that i feel extra worse, etc. I've noticed a pattern and sometimes I go back to look at the recent months and notice that my worst of days are always the week before, during or after my actual period SO, the absolute worst is probably the week after. I've tried to research the hormones that are highest during each phase of the cycle but i'm confused about what is considered which phase. I never got any good answers in my search for this

So, It's inevitable that we all have symptoms while standing, but do any of you also feel terrible just sitting? I feel the same feelings sitting a lot as I do standing and I understand "postural" orthostatic tachycardia, so, why would these horrible feelings still be present while I'm sitting down. For example just sitting at dinner and my head begins spinning and my body and I feel like I'm fading out, it's awful. Any ideas. ALSO, there has been many posts lately about eating a gluten free diet so as of 1-1, I started that, It's only a few days in but I hope I can stick to it and maybe months from now see some improvement. I'm thinking gluten ataxia could be something that is going on.

could this maybe be the yaz you're talking about http://users.erols.com/dgled/getbetter.htm

I just wanted to say congratulations! I've heard many times that pregnancy can help the pots because of the increased blood volume. Good luck, keep us informed.

rissy..... what days are the luteal phase? is the the week before during or after? i notice an increase in my symptoms the week before during and after and the week after especially worse. ALSO, after a complicated delivery, extreme blood loss, etc etc. my obgyn put the implanon in my arm and i kept it for only a few weeks because i thought that was what was causing the hemorrhaging but it was the retained placenta. so, i'm wondering if it was actually something to do with the implanon (hormones) that triggered my pots and not the blood loss/stress/trauma to my body like i thought.

mine says 1:320 speckled and 1:1280 atypical speckled and i have no idea what it means, they tell me most all women have a positive ana, i hate to be told that because i know its not true.

at the beach?! that sounds like so much fun. Glad it was good, ours was good as well. Can't wait to see your next video

I loved the video, you sing lovely and have cute dogs!! Merry Christmas everyone, hope today was a good day!!

I'm here in Atlanta and would love to join! Let me know if I can be of any help in your planning and organizing. Traci

Wow, I love all the responses! I'm glad others showed interest as well. I like the idea of the USB ones, I had never even heard of those. Thank you everyone for the links, ideas, etc.

I'm happy for you and about the appointment that went so well, that is great news. I'm sorry though you have to miss your son's concert. He more than likely knows that mommy has been feeling not well and he should understand and I know how you feel. It's sometimes a toss up, of course we love our kids and we put them first but at the same time, we have to take care of our own bodies and listen to them, try and heal ourselves so that we can do these things with the kids. It breaks my heart that I can't do all the things I want to with them and have to have others' help, etc. He knows you're a good mommy!!! Good luck with the new nutrition stuff, keep us posted.

Do any of you wear medical alert jewelry? Just curious. I'm not even sure what it would say, "fainter", "POTS", etc etc but I was thinking about it because besides people who are close to me, no one has any idea and what if I'm out alone somewhere and something happens.

I would give almost anything to not feel lightheaded 24/7. It is miserable to me so, I'd trade symptoms but it depends what the symptoms were I guess.

dani, I feel the same way. I've almost passed out multiple times recently while driving and now i'm terrified. I get that "adrenaline surge" or something, still not sure what to call it, and everything starts fading, vision, hearing, my entire body goes into a heat flash, of course, dizzy/lightheaded. I just want to figure this all out. I miss driving too.

Hope the IVIG helps. I would love to hear how the coming weeks go for you! good luck

Hi, I didn't really have a rough case of chickenpox but I know I had them as a child and about a year ago I had shingles. I wasn't sure what it was until afterwards. I actually gave it to my son who came down with the chicken pox two weeks later (perfect incubation timing) and nowadays they have the vaccine for it but because he wasn't even one yet, he had not had the shot. I felt horrible. My case of shingles was small but nonetheless painful and itchy and bothersome, uncomfortable for awhile. It was on my side/lower back area. I have never heard of it being on the face.