icesktr189 Posted November 26, 2011 Report Share Posted November 26, 2011 "The dizziness in POTS is often a result of redistributive changes in blood flow rather than reduced blood pressure, although the consequences are the same."I totally agree with that. I am even less dizzy standing and moving around then if I have to stand up and then sit down. Any change in posture is terrible for me. I do still experience dizziness while standing, but not to the extent of changing positions, even from standing to sitting. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 28, 2011 Report Share Posted November 28, 2011 I don't get dizzy but I feel faint, mainly from shortness of breathe that I now think is related to pooling. But my BP is stable in all positions. I really think dizziness has to so with BP issues or like you said flow issues. I haven't had a TTT though, I don;t want to torture myself, especially with my scary SOB. I feel my legs pool but don't see any color changes or edema happening.. Quote Link to comment Share on other sites More sharing options...
abnel Posted November 28, 2011 Report Share Posted November 28, 2011 Rich, it's interesting as you and I have similar symptoms (moderate to severe shortness of breath) and I rarely get classic "dizziness" either.I get giddy occasionally, the feeling of standing on a rocky boat or the feeling you get when you have just come off a rocky boat and you still have your 'sea legs', but not the dizziness where the room is actually spinning and you feel quesy.I also get light headed from shortness of breath, just as you describe it.Perhaps I am confusing the two definitions when really a doctor would view the two as the same symptom. Having had both though, I would say dizziness affects the brain/eye sight and causes nausea, whereas giddiness affects the entire body (feel like the entire body is swaying) but there is no nausea unless severe. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted November 29, 2011 Report Share Posted November 29, 2011 Well I am super lucky and get both dizziness and rocking on a boat feeling... however they switch back and forth Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted November 29, 2011 Report Share Posted November 29, 2011 Well I am super lucky and get both dizziness and rocking on a boat feeling... however they switch back and forthHi Dani, I totally feel for you! Dizziness is my worst symptom for sure, and I have it every day. Like you, I have both actual dizziness and unsteadiness/dysequilibrium. It's so tough to function this way. Does anything help your dizziness that you've found? (Sorry for threadjacking! Please feel free to PM me.) Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 29, 2011 Report Share Posted November 29, 2011 did you ever try Dramamine 2 for dizziness? It is much less drowsy Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 30, 2011 Report Share Posted November 30, 2011 Hi,Dr Grubb saw the blood pooling in 2002 and I just saw it 3 weeks ago when my husband mentionned it. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 30, 2011 Report Share Posted November 30, 2011 Dizziness in the context of POTS is lightheadedness - that is the result of reduced blood flow to the brain. Im not saying that because i think it or came up with it - Im saying it because this is what several research studies have demonstrated.Vertigo on the other hand is room-spinning, nauseating feelings. So I guess we can agree on lightheadness being dizziness because that is certainly how its been described previously on this website since its inception. Quote Link to comment Share on other sites More sharing options...
abnel Posted December 2, 2011 Report Share Posted December 2, 2011 Thanks very much for clearing that up Rama re the light headedness = dizziness according to research. Now I know why the doctors keep telling me I'm dizzy even though the room isn't spinning for me! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 2, 2011 Report Share Posted December 2, 2011 Is it normal with the "dizziness" to not be able to focus? I was trying to talk to my step dad today, and I cant keep focus on his face. I keep looking all around because its too hard. This happens all the time and its embarrasing. Quote Link to comment Share on other sites More sharing options...
Rachel Posted December 2, 2011 Report Share Posted December 2, 2011 Hi Annaliese,I don't remember having any discoloration in my feet and legs years ago, but I certainly do have it now. My feet turn very purple if I stand up for long. You can see pictures of my feet normal colored and turning very purple here: http://www.cranberry...es-of-pots.htmlI have measured my ankles, and after only two minutes of standing my ankles increase in size by 1/2 an inch due to blood pooling. At two minutes the color of my legs hasn't changed all that much, but the pooling is certainly there. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 5, 2011 Report Share Posted December 5, 2011 Rachel, anything help, like compression stockings? I have this same issue but haven't noticed the color change yet. I think its because I've very hypovolemic still lately.. Quote Link to comment Share on other sites More sharing options...
Rachel Posted December 5, 2011 Report Share Posted December 5, 2011 Rich,Compression stockings and midodrine help to lessen the blood pooling for me. I wear 30-40mmHg compression, and I take 15mg of midodrine every 3 1/2 to 4 hours.Rachel Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 6, 2011 Report Share Posted December 6, 2011 Rich,Compression stockings and midodrine help to lessen the blood pooling for me. I wear 30-40mmHg compression, and I take 15mg of midodrine every 3 1/2 to 4 hours.RachelAre they waste high, knee high or thigh high stockings and can you estimate how much relief they give you, like and extra 10 minutes to stand or something like that. My pooling is def getting worse every day and affects my breathing. Instead of getting dizzy from the pooling, I can't breath Quote Link to comment Share on other sites More sharing options...
Rachel Posted December 6, 2011 Report Share Posted December 6, 2011 Rich,I usually wear knee high compression. I also wear mid-thigh to waist compression from Spanx. I get the strongest compression they have, but it isn't graded like the medical compression. I would guess it to be about 30mmHg. I used to wear thigh high compression, but am no longer able to do so. I have also tried waist high compression in the past, but it it caused stomach pain. I need 40mmHg on my legs, but only 30 or so on my stomach.I find that with compression I am generally able to be upright for about twice as long as without compression. So instead of being able to stand semi-comfortably for one minute, I can safely push it to two minutes with compression on. Instead of only being able to sit in my recliner for an hour, I can sit for closer to 2 hours with compression. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 6, 2011 Report Share Posted December 6, 2011 I wear thigh high 30-40mm hose and would say that my symptoms are reduce by at least 50% by wearing them. I also think that their benefit is cumulative, to some degree. I had to take a week off from wearing them 2 summers ago while I treated a foot fungus. Everyday without the hose was worse than the day before. Compression is my best treatment! Quote Link to comment Share on other sites More sharing options...
E246 Posted December 6, 2011 Report Share Posted December 6, 2011 Hi,Rich, in a way i am same - don't really get dizzy just chest compression and sob.I get red streaks up the inner side of my knee on one side and have for years but didn't know it was this but otherwise i think i pool in my stomach and yet with hyper pot - low flow- i don't think this should happen.After a ttt in London which was fine the following day I was so dizzy i vomited when i finally stood up. It lasted all day and i understood what some others go through - dani - it must be awful.I also got this after a virus.Otherwise light headed but i think they are quite different. Quote Link to comment Share on other sites More sharing options...
mully2014 Posted December 7, 2011 Report Share Posted December 7, 2011 I've had my condition my whole life and now that I've been diagnosed for a while I'm able to make connections to some of the things that were happening when I was little. When I was younger my hands and feet would be really cold but wouldn't have discoloring. Now I have major discoloring (definetly NOT cute) this shows up in my feet, legs, thighs and hands. The discoloring will be blueish purple in a wierd pattern. These parts will still feel really cold during pooling which happens often even with thigh high compression stockings. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 8, 2011 Report Share Posted December 8, 2011 There is also a view that midodrine works in some patients because it stops the over compensation and excessive vasoconstriction in some POTS patients. In other words these patients have normal blood pooling and an inappropriate response to that pooling that causes excessive vasoconstriction and cerebral vasospasm. Just thought Id put that out there. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted December 9, 2011 Author Report Share Posted December 9, 2011 Rachel, thanks for the pics! Quote Link to comment Share on other sites More sharing options...
Chaos Posted December 9, 2011 Report Share Posted December 9, 2011 There is also a view that midodrine works in some patients because it stops the over compensation and excessive vasoconstriction in some POTS patients. In other words these patients have normal blood pooling and an inappropriate response to that pooling that causes excessive vasoconstriction and cerebral vasospasm. Just thought Id put that out there. Interesting. Do you know of a study on that one? Would like to see it if you have it. Quote Link to comment Share on other sites More sharing options...
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