misstraci

Wow lfreem02, you're awesome , thanks for the links! and information. i'm going to try and see what happens, it can't hurt. so, have you seen improvement with yourself having been gluten free recently?

Hi everyone. I recently had an ALCAT test and the results came back. there were a few various things that i was said to be "intolerant" of in ranges of severe, moderate, mild and then not at all. The gluten came back as moderate and suggested that I avoid it. I would like some advice from those of you who have axed this from their diet. What are some things I should avoid and also, did getting it out of your system help your dysautonomia at all? How long does it take to leave your body and see any results? Thanks Traci

1. What scares you most about pots? I'm scared of dying. I'm scared of driving and also of never getting well or even gettting worse. 2. What types of things scare you in real life? Vomiting and death are my two big ones

Thanks Bella and Katy! I didn't think about the anemia and other vitamin deficiencies. And taking pics of them is a good idea, i didn't even think about that , thank you

Thank you guys! I just read a little bit and I'm not sure I fit most of the criteria except in the vascular category (which is supposively really dangerous). I have really pale skin and can see all my veins through it.

Oh, I didn't know that! I've never been evaluated for EDS, I'm not even really sure what that is but I have heard the term before. Do you have it or could tell me about it?

Someone pointed out to me today (because I had shorts on and apparently don't check out my own legs too often) that I had multiple big bruises on both my legs. What could this mean? I don't remember hitting myself or running into anything. In the past, I've noticed bruises on my legs for no reason too but this time they are big and dark. I thought it meant blood clots or something. Is this true?

Someone pointed out to me today (because I had shorts on and apparently don't check out my own legs too often) that I had multiple big bruises on both my legs. What could this mean? I don't remember hitting myself or running into anything. In the past, I've noticed bruises on my legs for no reason too but this time they are big and dark. I thought it meant blood clots or something. Is this true?

This is sad that we all feel so terribly but it's reality right? I feel like others mentioned, kinda dead, thinking I'm about to wake up from the nightmare but it just continues on. I'm very tachy. First going from laying to sitting, my heart beats crazy fast and then from sitting on the bed to walking, it feels faster. I'm ususally very disoriented feeling and lightheaded.

Thanks Anoj, it's ok, I think more than anything, I just like to hear other peoples stories with similar situations. I'm glad you got back able to drive a little. but sorry about the setbacks, hopefully i'm just going through a big setback mcblonde, thanks and I'm sorry about your situation too!! I never thought about the blood pooling in the stomach, hmm. I hope we are both able to figure things out soon.

Thanks guys. I should just ask my PCP then and hopefully he can order the holter. mytwogirls........ thanks for writing. those feelings i have increase too when i have tea or chocolate, i know that is something i need to cut back on but I love those things! I know what you mean about taking the breath away, it's scary because i don't know what it is.

Thanks Libby for writing back. It makes me feel a little better to know you experience the same feeling. I've wanted to do a holter but I don't really have a cardiologist right now. One that I want to go back to anyways. I need to find someone and ask for one and hope they give it to me. So the PVCs and ventricular stuff isn't dangerous?

Does anyone have weird heart sensations like it's in their doing flip flops? Sometimes in addition to the flip flops, mine feels like the bottom just drops out or like my heart just threw up. I know that sounds weird but that is the only analogy I can think of to describe it. Does anyone have similar feelings that they get and what does it mean. Thanks

Has anyone ever quit driving becuase of their symptoms but was able to start back again? I want to hear about it. I am so frustrated (as is my significant other) that I can drive and be independant. It's really bothering me lately but I'm terrified because I feel super lightheaded and "seizury" when I drive.

Thanks for the replies everyone. I like it when I'm not the only one who experiences weird things I suppose I should do more research on the vosovagul stuff. Where is the vasovagal nerve located? (I hope that's not a dumb question) but i don't know

I get really, really lightheaded and feel like i'm going to pass out at times (not every single time but a lot) when I use the elevator, stretch, and yawn. Does this affect anyone else? Do you ever get symtpoms from doing these things?

Thank you for sharing hope, I definitely need it and appreciate it and I'm sure others do as well. I'm happy for you for the job and that you're feeling ok doing it and everything. I love your analogy there at the end about "If you try to fight the current, you're done for. But if you relax and swim with the current your chances of getting to the other bank are greatly improved." Thanks

Thanks Firewatcher for a quick response. Yes, I will PM you for some info. Sorry about your good doctor who went to Mayo, that stinks! And I am just a little East of Atlanta, really close to the city. I've tried people at Piedmont, Emory, and someone at Atlanta Medical center, nothing good so far.

Hi everyone. I am looking for an excellent neurologist and/or cardiologist and even a primary care physician in the Atlanta Area. I've seen many, many people here and can not seem to find anyone who cares. So, I'm seeing if any of you guys have someone in Atlanta who you are very happy with that you could recommend to me please. Thank you Traci

Lemons, I enjoyed reading this post. Glad you are pushing through and got the new job, congrats!! Hope it continues to go well. I have been having similar experiences as your tennis match. Where I am doing lots of physical activity, still feeling not well, dimmed vision, crazy heartrate, weird head sensations, yet i just keep doing that task, and push through. My favorite part of your post is this "(if I fail, I fail. But I am at least going to fail trying)". LOVE IT

hi julie. i actually went this more as a matter of fact, to the dentist. my whole life, i've never had a cavity, well guess who has 3 all of sudden? ..... this girl. well, i had them filled this morning and i was not looking forward to it, i was so scared and terrified of what the experience was going to be life. the numbing gel and shots (not sure exactly the names of them) didn't cause me any discomfort or side effects. my only three complaints from the experience were. 1. they had me practicaly laid down but then my head was even more tilted back, it was crazy and i couldn't swallow becuase your mouth is jacked open and i kept feeling like i was going to choke 2. once it was over and they put the chair upright. they said, "ok, you're good, you can go" hahah, i was like, ok thanks,, but i had to sit for awhile because i was terribly dizzy and lightheaded from being almost upside down in that stupid chair 3. my mouth and lips were numb for quite some time and i was starving as i had not eaten breakfast and now it was on into lunchtime and so i attempted to eat out at my fave restaraunt but my numb lips made me go slow and spit my drink (accidentally of course) I wish you luck if you end up doing it. I don't think a reaction is likely!!!!

thanks lemons. i'm not sure the compression strength on these but they are customizable, size and come in lots of awesome colors http://www.customsportssleeves.com/Custom-Compression-Arm-Sleeve_p_17.html

I know compression socks, etc are there to help us but what about the arm variety. Has anyone used those before and does that help? I just saw some for athletes and thought that maybe the arm compressions could help push more blood to the middle of our bodies from the arms also, didn't know if that made sense but just thought I'd ask and see. Thanks

thanks Hilbiligrl. YOu have no idea how much it means to me what you said.

sonya Hi. I definitely feel like that I am and he confirmed that I am a burden just this week as a matter of fact. I'm still feeling very down and depressed about. It's kinda a catch 22 because he's very helpful taking care of both me and the kids but at the same time, hates his own life because he can't do what he wants because he's always taking care of me/us. We had a talk the other day and says his life is no fun and i asked what I could do to help and he said "Get Better"