brethor9 Posted November 4, 2011 Report Share Posted November 4, 2011 Hi AllSo today I decide to give my compression stockings another try and find that they are making my symptoms worse. My heart rate has increased even more and I am more dizzy and lightheaded....is this normal? Also I find when it comes to pooling it seems to be the worst in my stomach down to my thighs....my calf area is white and my feet go beet red (same as my thighs) is there a different type of compression that would be better for me?? I was thinking of maybe a body shaper?ThanksBren Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 5, 2011 Report Share Posted November 5, 2011 What length are you wearing? I wear my full-length most often and they seem to do wonders (the only time I feel significant improvement is when the compression is on my stomach and thighs. For a while I too felt kind of tingly-ish when I wore my stockings and even a bit light headed. And my toes still turn pinkish red. When I spoke to my doctor he told me that those are all good symptoms (but still, talk to your own doctor as mine may have been kind of different than yours). Anyway he said that the tingling in my legs and the pinkness in my toes are actually from increased circulation and that that's how most people normally feel. Also I learned that my lightheaded-ness was actually from increased blood in my head. :-) So for me all the symptoms were good and after time I got used to it (well sort of... for me my body just started to associate those feelings with how good I feel when I'm wearing my stockings.) So basically, now I don't mind the feelings, I've gotten used to them and they kind of make me feel better! Like the stockings are working correctly. But please, please, talk to a doctor about it! Everyone's body is different and I don't want you ignoring important signs from your body without speaking to a professional and really looking at everything closely.Kate Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted November 5, 2011 Report Share Posted November 5, 2011 I recently went through this. I decided to give the compression stockings another try and felt much worse that day - dizzier and my feet were still changing color standing. I thought the red/blue/purple feet was from pooling, but if you have the stockings on you shouldn't be pooling, right? I just don't get this thing. I thought I might be overreacting attributing the dizziness to the stockings, but now that you say this it makes me wonder. Maybe it's like Kate says and it just takes some getting used to. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted November 5, 2011 Author Report Share Posted November 5, 2011 yeah I dont know Naomi, I feel the same way! this is the second time I have tried and they just seem to make things worse.....makes me wonder if there isnt something more underlying everything that is causing the pooling etc because the standard treatments just dont work. I may give the body shaper a try and see if I have better luck!Bren Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 5, 2011 Report Share Posted November 5, 2011 Ya, definitely do what your body feels like. It did take me about a month to get used to it though, just fyi. :-) Either way, good luck!!!Kate Quote Link to comment Share on other sites More sharing options...
abnel Posted November 5, 2011 Report Share Posted November 5, 2011 Hi Bren, I wonder what compression you are using? I felt quite agitated, tachy and like my chest was going to explode from extra pressure when I was in 30-40mmHg. It felt like all the blood that normally pools in the lower part of my body had suddenly been transmitted into the top part of my body (which is probably what it's meant to do), but it made me feel mightly weird and I didn't like the feeling.But I seem to be able to tolerate 20-30mmHg. Even the lower compression 20mmHg has some effect for me although not as good as the higher compression. Hope the body shaper help you. Let us know. Quote Link to comment Share on other sites More sharing options...
Frugalmama Posted November 5, 2011 Report Share Posted November 5, 2011 I found the same thing! I have 30-40mmHg waist-high hose, and I found my symptoms were far worse when wearing them. Interesting to think it could takes weeks to acclimitize... Quote Link to comment Share on other sites More sharing options...
issie Posted November 5, 2011 Report Share Posted November 5, 2011 If you are HyperPOTS and have high blood pressure - this is going to increase your blood pressure. There is a subset of us that instead of our blood vessels needing to constrict - we need them to relax - because they constrict too much. There is a possible NO (nitric oxide) deficit. My doctor told me if I wear compression hose to go with the lighter weight because I'm one of those type people. I tend to have higher bp's. I still have the purple feet and my blood flow isn't correct - but I think it's because I'm not flowing enough because of constricted blood vessels. If your blood doesn't flow enough you dont carry oxygen correctly either - you don't get enough to your brain. I've found that abdominal binders are good for me. Things like Spanx or a briefer (I like one by Barely There) - helps to keep my blood from pooling in my ab and it helps with naseau. On my legs, a lighter weight hose does better. When I was wearing the higher strength - my neuropathy got a whole lot worse in my legs and feet. Now, I'm better with that. Sometimes, I don't wear any thing on my legs. But, my veins in my legs feel better with the hose.Issie Quote Link to comment Share on other sites More sharing options...
chipper Posted November 6, 2011 Report Share Posted November 6, 2011 They made me truly dizzy twice. That was enough for me. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 6, 2011 Report Share Posted November 6, 2011 Hi Bren,Some days my compression stockings make me better, other days I can't get them off fast enough. I can't really tell what that's about.But, I also can't wear regular bras anymore because I can not take that band of pressure around my torso right under my heart. It totally sets off my POTS symptoms. So, in finding alternatives, I have discovered that wearing body shaping camisoles that have a bra built in (cups but no back strap) actually makes me feel better. The compression distributed evenly around my whole torso does something to help me and it solves the bra problem. I think its that compression around my abdomen that helps since I get a lot of pooling in my gut.Hope you find a good combo!Katie Quote Link to comment Share on other sites More sharing options...
Lenna Posted November 6, 2011 Report Share Posted November 6, 2011 If you are HyperPOTS and have high blood pressure - this is going to increase your blood pressure. There is a subset of us that instead of our blood vessels needing to constrict - we need them to relax - because they constrict too much. There is a possible NO (nitric oxide) deficit. My doctor told me if I wear compression hose to go with the lighter weight because I'm one of those type people. I tend to have higher bp's. I still have the purple feet and my blood flow isn't correct - but I think it's because I'm not flowing enough because of constricted blood vessels. If your blood doesn't flow enough you dont carry oxygen correctly either - you don't get enough to your brain. I've found that abdominal binders are good for me. Things like Spanx or a briefer (I like one by Barely There) - helps to keep my blood from pooling in my ab and it helps with naseau. On my legs, a lighter weight hose does better. When I was wearing the higher strength - my neuropathy got a whole lot worse in my legs and feet. Now, I'm better with that. Sometimes, I don't wear any thing on my legs. But, my veins in my legs feel better with the hose.IssieIssie, that is the case with my son. Everything that was supposed to make him feel better actually made him feel worse. Now we know the he is deficient in nitric oxide and his vessels are too constricted. He now takes Losarten to dilate his blood vessels and he is doing so much better. Quote Link to comment Share on other sites More sharing options...
issie Posted November 7, 2011 Report Share Posted November 7, 2011 Lenna,How is the Losarten helping him? I know it increases Potassium levels and it dilates the blood vessels. What else does it do and how does it affect him? If I'm not mistaken wasn't it him a while back that used it and rode his bike and then there was too much NO, or was that another child on this med? What else do you do for him?Issie Quote Link to comment Share on other sites More sharing options...
Lenna Posted November 7, 2011 Report Share Posted November 7, 2011 Dan was diagnosed as deficient in NO about a year ago. He's now taking 25 mg. of Losarten every morning to increase the NO and dilate his blood vessels, as well as .05 mg. of Florinef. He's on a bunch of other stuff that he's been on for 3 or 4 years - Domperidone for nausea, Cypro to help his appetite, melatonin to help him sleep, prilosec, miralex, probiotics and a bunch of other supplements. Since beginning the Losarten and Florinef, his energy and concentration have noticeably increased. Yes, he started riding his bike after beginning these new meds, This past summer he was riding about 8 miles 3 or 4 times a week. Now that the weather is colder, he is using a treadmill. He's been feeling better for almost 6 months now. He still struggles, especially in the mornings. But overall he is much improved. Quote Link to comment Share on other sites More sharing options...
issie Posted November 7, 2011 Report Share Posted November 7, 2011 I'm so happy for him and hope he continues to improve. What is the idea behind taking the Florinef with the Losarten? It seems like that would up his blood pressure. Is he high or low blood pressure? Or is it a fine balancing act in order to keep his hydration levels up?Issie Quote Link to comment Share on other sites More sharing options...
Lenna Posted November 7, 2011 Report Share Posted November 7, 2011 Dan's blood pressure was typically in the normal range until he started taking Losarten; then it started getting too low which was a problem for him. The Florinef does seem to balance things out for him. Lately I keep noticing some pink in his cheeks...haven't seen that in 4 years! Quote Link to comment Share on other sites More sharing options...
abnel Posted November 7, 2011 Report Share Posted November 7, 2011 If you are HyperPOTS and have high blood pressure - this is going to increase your blood pressure. There is a subset of us that instead of our blood vessels needing to constrict - we need them to relax - because they constrict too much. There is a possible NO (nitric oxide) deficit. My doctor told me if I wear compression hose to go with the lighter weight because I'm one of those type people. I tend to have higher bp's. I still have the purple feet and my blood flow isn't correct - but I think it's because I'm not flowing enough because of constricted blood vessels. IssieSlightly off topic, but Issie that's so interesting that you mentioned that hyper-POTS have a tendency to have blood vessels that constrict, hence the purple feet and hands. I have the inappropriate vasoconstriction happening on my extremities but low blood pressure. On Florinef it's much better. Makes me wonder about the various classifications of POTS and how helpful they really are, especially with regard to treatment. Quote Link to comment Share on other sites More sharing options...
Lenna Posted November 7, 2011 Report Share Posted November 7, 2011 I believe that my son falls under Dr. Julius Stewart's classification of "low flow POTS". It's been extremely helpful to him to have this clarification, because for 3 years he was given vasoconstrictors by various doctors, all of which made him feel worse. Now we know why, and have been able to target his treatment more appropriately. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted November 7, 2011 Author Report Share Posted November 7, 2011 ok so the body shaper isnt making me feel much better and wow do i feel awful when it comes off! thats even at light compression..... I definately think that with my body its more of an internal mechanism gone wrong and no amount of outside compression is going to help! Oddly enough I found through a weird experiment while having a shower? that when it is hot my head instantly gets congested and it feels like every vein in my body tightens and I feel extremely ill.....if I open the shower and let in all of the cold air it instantly clears and I feel much better but it doesnt last! so this tells me that the switch that controls constriction/ dilation is definately broken.....now if I could only figure out why or how to fix it......I dont understand why this is so hard for dr's to figure out when we can figure it out? Issie I do think I am hyper-pots I have major issues with norepinephrine my blood pressure only drops really bad when the nori is really bad....I think its at the root of the problem in my case.....my specialist did say it is responsible for maintaining constriction/dilation.....oddly enough my symptoms didnt get really horrible until after I had a partial hyst....also interesting is the fact I have been off the BCP since then after being on it since I was 18 (read that it constricts/dilates also) sorry went in a whole new direction there!!!! Bren Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted November 7, 2011 Report Share Posted November 7, 2011 Lenna - how do they know your son is NO deficient? Is there a test? So happy that he's doing better! Quote Link to comment Share on other sites More sharing options...
issie Posted November 7, 2011 Report Share Posted November 7, 2011 Lots of us have had hysterectomy's. Some sort of hormone connection there too. Don't really quite know. Have read that progesterone (may) make POTS worse. It did for me. I couldn't use it after my complete hysterectomy. But, now use only estriol and some other natural supplements for help in that area.There are different subsets of POTS I think at least three. I typed in Losarten and pulled up some old conversations on it and also it goes in to discussing the different subsets. Good info there, if you want to learn some more. Interesting that this goes back a ways and we are still only "discovering" these things.Right now, I'm using small amounts of l-arginine to open my blood vessels. I can tell a difference. If I use too much it will give me a miagraine. I can only use 1/4 of a pill. But, if I don't I feel worse.FYI, hot water expands, cold constricts. We are quite the scientist aren't we? LOLIssie Quote Link to comment Share on other sites More sharing options...
issie Posted November 7, 2011 Report Share Posted November 7, 2011 As for the hot water vs. cool. It might not be the constriction of the blood vessels that's the issue. I feel worse with hot water too and I need my blood vessels to open. I think it's just an intolerance to heat and most of us have that - no matter what type of POTS we have. Quote Link to comment Share on other sites More sharing options...
Lenna Posted November 7, 2011 Report Share Posted November 7, 2011 Lenna - how do they know your son is NO deficient? Is there a test? So happy that he's doing better!He took part in a clinical study at Beth Israel Deaconess Hospital during the summer of 2010. Most of the participants had too much NO. Dan did not have enough. If I remember right, they do a bunch of tests, and then repeat them while using something called L-MNNA which temporarily shuts down NO production. Depending on how the body reacts to the cessation of NO, they can tell if the body has too much or not enough. I'm know that I'm oversimplifying this!! I don't know why they don't use this as a routine test when constriction/dilation is in question, but they don't. At least, I don't think they do. Quote Link to comment Share on other sites More sharing options...
issie Posted November 7, 2011 Report Share Posted November 7, 2011 Do you know what the L-MNNA stands for? I tried to look it up and couldn't find anything on it. Quote Link to comment Share on other sites More sharing options...
Lenna Posted November 7, 2011 Report Share Posted November 7, 2011 Hi Issie,I might have gotten my letters mixed up. It's L-NMMA.It's also known as L-NG-monomethyl Arginine citrate Quote Link to comment Share on other sites More sharing options...
issie Posted November 7, 2011 Report Share Posted November 7, 2011 Hi Issie,I might have gotten my letters mixed up. It's L-NMMA.It's also known as L-NG-monomethyl Arginine citrateOkay, now I've found it. Yes it is a potent scavenger of NO. For those with too high NO this drug may be very beneficial. Those with real bad OI issues (??????) But, for us low in NO this would KILLLLL us. I hate to think how your son felt when they gave him this. What happened?Issie Quote Link to comment Share on other sites More sharing options...
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