dizzygirl Posted October 25, 2005 Report Share Posted October 25, 2005 Hi all..I know that w/pots that you can have paleness.. well for months now actually.. I have been as white and pale as you can get.. I especially noticed it today.. as I was standing at the bathroom sink washing my hands.. and I hadnot ben feeling good at all today.. had a very early morning full of testing.. then got hooked up to a 24 hour monitor.. and came home.. well during the 45 minutes that it took for me to get home.. I had 2 near syncope spells.. and a spell of my legs collapsing as I was trying to get into the house before I totally passed out.. but my face gets so white.. as do my lips.. half the time you cant tell my lips apart from my face.. and my hands and feet are so ice cold.. and the rest feels like it is on fire...SO I am wondering what exactly causing this potsy thing to happen?My HR has skyrocketted up to over 200bpm.. multiple times to day.. I am curious to see what this monitor shows.. hopefully some explains and answers will be clarified..casperthefriendlyghost Quote Link to comment Share on other sites More sharing options...
KathyP Posted October 25, 2005 Report Share Posted October 25, 2005 Hi Linda;My best guess would be low blood volume. Sometimes when I stand up it is like all the blood drains from my entire head when I am having a bad day with dysautonomia. My doctor told me that is because of low blood volume. Talk with your doctor about this to be sure. Otherwise, all that you can do is drink drink drink and eat something salty.Hope things get better. Take care.KathyP Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted October 25, 2005 Author Report Share Posted October 25, 2005 kathy P..'Hmmm. low blood volume huh?? When I was at the clevlenad clinic a few yrs. back.. they tried to do a blood volume test on me... and they tied for almost a hour to get a large enough vein for the needle so that they could do the test.. but could not do it.. b/c my veins bite.. is the any other way to get you blood volume checked?I know that I did a big NONO today.. I ate Burger King french fries.. i never eat fries really.. but I was tanding at the counter.. and I watched them dump the huge amount of salt on the fires.. and I'm like OMG!! I so need some of those salty little things!..nee less to say the salt.. is my best friend... Quote Link to comment Share on other sites More sharing options...
KathyP Posted October 25, 2005 Report Share Posted October 25, 2005 Hi Linda;Me again! I can totally relate to the vein and blood draw thing. When I am feeling down with syptoms and have to have blood drawn they have a very hard time getting a good vein. But when I am feeling great and my symptoms are very few there is never a problem with getting blood. That too has something to do with blood volume. The lower the volume the thinner the veins. I may be wrong, but it would be a great question for your doctor. KathyP Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted October 25, 2005 Author Report Share Posted October 25, 2005 thank you kathy.. since I was born I have never been "easy to get IV's in or draw blood from.. I have had IV's inserted in my head.. (yes my head..) my feet.. my thumb and the back of my wrist in them teeny tiny veins.. boy I think that that one hurt the most.. during my last tilt test they tried like 7-8 time to get an IV in my.. and multiple nurses.. plus IV team.. finally in the thumb it went.. even ona good days.. not much luck..oh my the world of dysautonomia su***!! Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted October 26, 2005 Report Share Posted October 26, 2005 I would have agree with Kathy regarding your paleness likely being a sign of low blood volume. I looked TERRIBLE before I went on my daily iv treatment and that is one thing it helps is to increase blood volume as well as blood pressure. The fact you were craving those salty fries earlier might have been your body's way of telling you your tank was getting low. I know when I feel bad now to immediately hook up and start cramming crackers in my mouth. Fluids and salt, fluids and salt... but I do look better. I don't look like death warmed over anymore. So, my unprofessional opinion is that you probably have low blood volume (or perhaps just plain old dehydrated). Goodnight Casper- at least it's your time of the year!Carmen Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted October 26, 2005 Report Share Posted October 26, 2005 Hey linda,I get pale, but usually right before I grey out. I don't know what to tell you, but the low blood-volume theory sounds as good as any. Hope you start getting some color back...although Halloween is right around the corner and now you have a free costume (thank god for small favors LOL) Take care,Lauren Quote Link to comment Share on other sites More sharing options...
DancingLight Posted October 26, 2005 Report Share Posted October 26, 2005 Linda,You absolutely may NOT be Casper the Friendly Ghost...I am Casper! Okay, teasing you, you know that right???No really. You won't believe this. But, my PT said to me the other day "Emily, you can just be Casper for Halloween. You won't have to do anything to dress up!" She thought she was sooooo funny!Then, I emailed my POTS doc and titled the email 'Casper the Friendly Ghost here..." I kid you not!So, while I do not have an answer for you, my color is TERRIBLE. I do NOT 'look good'. I look as bad as I feel. After surgery I was literally gray for a long while...not a nice things. Scared my parents that's for sure.I do not know why my color has not returned at all. I'm always really pale. And the color leaves my face the more tired I get. But, it has been extra-bad this year.One possible explanation that my POTS doc gave me was that I could be pouring out too much norepinephrine and epiniphrene and that would cause the blood to leave the surface of the skin of the face like you descrive. I think that is what he was saying. I get things a bit mixed up though, so don't quote me on that!Well, okay, since Casper is a FRIENDLY ghost, I guess there can be two of us...Later alligator!Emily Quote Link to comment Share on other sites More sharing options...
OCsunshine Posted October 26, 2005 Report Share Posted October 26, 2005 I would think that just the OI/POTS itself would cause paleness. When I'm lightheaded, I know my BP is low, and I can't really stand up... I am totally pale.I just always thought it was the blood dropping into my hands and feet (happens right away with me on the TTT). My feet and hands turn bright purple, my face gets totally pale. No blood is going up to my brain/head/face... hence the NMH/NCS. Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted October 26, 2005 Author Report Share Posted October 26, 2005 thanks guys!!And Emily.. my fellow Casper ghost.. we can be casper twins!I go see my cardiologist next week.. and I am going to talk to him about my plaeness. among other things!!WOW all I have done for the past 5-6 days is sleep sleep sleep! Last nigth I even slept thru my favorite show 7th Heaven!! now that is just sad! it was looking like a good one too!!But thanks for the pointers.. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted October 26, 2005 Report Share Posted October 26, 2005 My face and neck turn bright red, like a fire engine. Especially when my bp is high. It's actually my neck and just my cheeks. Then this red stripe goes up around my eyelids. It is really bizarre. It is worst after I shower and I barely use warm water. I look like a red raccoon...shockinglypinkmorgan Quote Link to comment Share on other sites More sharing options...
joanie Posted October 26, 2005 Report Share Posted October 26, 2005 My daughter has always had pale, almost transclucent skin. Just before she got sick, she started to dabble in modeling. The makeup poelpe made this big deal about the skin- how they hardly ever saw it this "luminescent." When we first saw Dr. Grubb, he called it "POTS " skin. I thought it speaks to the link that LIndz has with EDS- the collagen in the skin being a little different (scaring, etc.) Don't know for sure. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted October 26, 2005 Report Share Posted October 26, 2005 Hey ~ I think I have the title of Casper! Almost every doctor I've ever seen wanted to test me for anemia. I can't imagine anyone being whiter than me. I guess I will join the "casper club" with you all Quote Link to comment Share on other sites More sharing options...
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