cma

I know that some of you get swollen ankles, because of the blood pooling, but for me I get swollen toes and only two of them. This is so weird, could this be something other than blood pooling. I don't have diabetes. Thanks, cma

Sorry, but I don't have really wise words I just can relate. On most days I am also very anxious to be alone, but I have to. I keep my cell phone close to me all the time. I try to do all the things that I have to like taking a shower, washing dishes, a little exercise when my man is at home with me. I don't go out alone, although I am taking beta blokers walking raises my hr and I get slightly lightheaded and when I am alone my thoughts start racing, I become anxious and I am afraid to faint and all that stuff, so for me I feel safer with someone or at home. I also get scared when my heart starts racing and it is very difficult for me to control my thoughts at that time. I am trying and learning though, also reading spiritual stuff and trying to meditate and taking some calming herbs. I dream about that day when I will be able to go shoping alone again or taking a nice walk in the park. Strenght and peace of mind to all of us. cma

MomtoGuliana the recipe looks so good. I didn't know that you have to simmer the herbs. Thank you so much for sharing it.

I am trying the tea as EM recommended. It doesn't taste very bad until the tea is almost gone although I try to stir it frequently when drinking at the end all the yucky stuff is waiting for me, but it's ok the chinese herbs that i tried were way worse and I still drank it, too bad that it didn't really help me. I drink mine with lemon with no honey or milk, but I used only half of the teaspoon. The taste was not that spicy, it was bitter, but I guess as someone already mentioned the mixture of the spice can be different. Those with low blood sugar level or taking medicine to reduce it should be carefull, because turmeric may increase the effect of insulin and oral drugs for diabetes as it has blood sugar lowering effect. Not recommended to take it at the same time as aspirin, because turmeric can decrease the ability for blood to clot.

That's awesome. Turmeric is one of the supplements used by one lady who also has POTS. Here is more information about turmeric, interactions with drugs and side effects: http://www.drugdigest.org/wps/portal/!...lect_category=3 EM how much of it are you using when making tea? cma

I can totaly relate. On a good day I am full of hope, ready to fight and go on, am eager to start doing something productive like learning a new language even though it is very difficult, I see my future bright and happy. But when a bad day comes it's a different story, I start focusing on those negative thoughts what if... what if I won't get better, what if I am dying, what if there is something seriously wrong with my heart or maybe with my brain, what if I won't be able to have kids, get back to school, work etc. It seems that those nasty thoughts are waiting when I am the most vulnerable and then they hit. It is very hard to stay rational in those moments. cma

bren 22 I have not tried osteopath. I was thinking maybe I should try chiropractor. Anyways what is the difference between the two. Since I can't work at the moment money is a little bit of an issue for me and I have to use brakes in many things that I would like to try. I don't know if you are aware of this site, but one lady gives her experience about different kind of alternative therapies that she has tried herself http://www.healthy-holistic-living.com/alt...h-solution.html I thought maybe some of you would like to check it out. cma

Hi, I don't know if this will be helpfull, but I've tried homeopathy here in Ireland with no success. She was also very positive that the remedies will help me, but after trying a few different ones I just gave up. Your story might be a different one, and I would love to hear that someone was cured with natural medicine. I've also tried acupuncture and oriental herbs. Nothing gave me the relief even from tachycardia, although acupuncture and herbs are considered to be very effective for heart problems. Maybe the girl wasn't very experienced and chose the wrong points and herbs.

Thank you all for your answers. I am on Bisoprolol myself, but only 1.25mg in the morning. I also couldn't manage without them. My heart rate at rest when sitting is around 75, but when I stand up it's around 95 with meds. I guess it's not bad, but it's still for some reason uncomfortable. I don't know if the higher dosage would do any good for me, because my bp at the moment is on the lower side and this kind of drug also reduces the blood pressure.

I was just wondering after taking beta blockers what is the difference of you supine, sitting and standing heart rates? Also does anyone know how fast they kick in and for how many hours beta blockers are effective? I couldn't find this info online. cma

Wow, this is exactly how I feel . This symptom of unreality is so much worse when I am in the supermarket or places with many ppl like restaurants that for a very long time I thought it was anxiety related, but I also have it at home. Some days it is very obvious some I barely notice it. I don't lose the thought that I was trying to express, but I feel so unreal like you said like in a dream, when I walk it almost seems that the legs are not mine and that they won't listen to me, but they do It is so hard to explain this to the doctors and one even told me that these are the first symptoms of MS, but after me mentioning that I had an MRI and it was ruled out done he only shruged. What is interesting that the feeling of unreality is one of the symptoms for anxiety also so maybe it is related with adrenalin rush. cma

I can relate to you also. This post is very similar to one of mine. This is exactly how I feel regarding my friends. If you haven't read my post, please do the Earth mother wrote such a funny message it will crack you up. It is the same with me I can officially say that I have only one true friend left who is not scared of what I am going through and supports me in every way possible, it's my fiance. I find it even hard to be with my parents. I think that my mom still can't accept that something is wrong with me. I am longing for my old life so bad, and I still can't get used to this one with so many restrictions. I don't go anytwhere alone, I am afraid to faint and be alone in that situation. But I miss that independence so much. My fiance knows that I want to go everywhere so the other day he took me to Dublin. He let me know in advance that if I won't feel like it we will stay in the car and just drive around to see the town. I didn't feel like taking long walks around the blocks so we just drove around. I enjoy these trips, but at the same time I hurt so bad when I see all the ppl walking around shoping, going to jobs, restaurants etc. So at the moment I am just trying to get used to the fact that I have to lead a different kind of life. Maybe it will be temporary or maybe this is the kind of a life that I will have to live for many years to come.

I found a link with in my opinion pretty good exercises for someone who is not able to do squats and lunges. I think these are very gentle and effective exercises to start strenghtening legs. http://www.sld.cu/galerias/pdf/sitios/reha...ion/leg-str.pdf

This topic is so close to my heart. Well especially one part of it. I am in a relationship, actually we are engaged. I met him online and we've been together for five years. He is the most amazing guy I can imagine myself being with and the way he handles all this situation is brilliant. It is not easy for either of us, I feel so guilty sometimes, that because of me our life had to change so drastically. The circle of our friends became very small and we don't go clubing or drinking. But I still believe that everything happens for a reason and I am trying to be ok with whatever is going on in our life at the moment. I do get scared thinking about the future, which I know isn't very healthy thing to do, but... I would love to have kids, but again I am having so many doubts how I would handle that. It would be a good time actually now that I am spending so much time at home anyways, but I guess it is not time yet since I am having so many doubts how would I take care of my kid. Maybe I am afraid that I won't be a good enough mom if I won't have enough the energy to run around with them, play, take them to fun places etc.

The reason why I asked it is because nowadays you can find a lot of people online like youtube etc. who talk about the law of attraction and how they are successfully using it and I just wanted to start a discussion and to see what people with chronic illnesses think about that. Some part of me wants to believe it. I was very into it after watching the movie ?What the bleep do we know?. I still don?t like the idea that we are here only because someone or something put as here and we have no power what so ever to control anything.

Hi, I don't know maybe there was a post like that already. Just wanted to know if you believe in it? If it is true that you are what you think about, have we all did this to ourselves ?

I don't even know how to handle any kind of arrythmias. Every time when my heart is doing something funny I get so scared and especially after that time when I ended up in the ER with severe tachycardia. The heart was beating so hard it seemed it was going to pop out of the chest. Here it just did something funny again, for couple of times the beat was very strong. This is still new to me and I don't know what that is. I am taking beta blockers so maybe it is related with drugs. I've tried magnesium, but it didn't help. I was taking it with calcium and it seemed that calcium helped more, but only for couple of days.

I don't even know if this is the place to post a message like this, but i guess it is POTS related, so... I am having one of those down days. Yesterday we went to the store and while waiting in line I felt hot, weak and suddenly flushed. After reading so many information on this forum the first thing that entered my mind was mast cell activation disorder. I was tearing all the way back home and I wanted to cry so bad, but I felt that emotions like that left me feeling worse. Oh great no I can't even cry properly. I dwelt on all the things that were taken away from me. I feel that I am losing my friends, they just don't understan what is going on and afer a couple of days after me feeling better they think that I am healthy again and I can go partying, drinking etc. One of them told me that she can't imagine how can I manage spending all this time at home, she would go mad. It hurts so bad to hear this kind of words from someone who is close to you and who is so insensible. " Thanks for making me feel so much better, because this is the life that I've always dreamt about, right?" I feel so scared about the future, and I don't know where to find strength to go on.

I talked about them with my health practitioner and she advised against wearing them too much as she feels they cause an abnormal walking gait (the opposite of what MBT claim). How interesting, the one that I talked to said that they are awesome and she is planning on buying one more pair for the casual wear, because the ones she had was just for work. I know I want to try them, so I'll have to start saving now

This last bit is something that I came up with myself (no medical evidence for helping blood pooling) - wearing MBT trainers. They have rounded soles to throw you off balance and therefore increase muscle contraction in the legs whilst walking and standing, my theory is that this increased muscle work helps to overcome pooling by increasing venous return. Flop This is so interesting, because some time ago I was also wondering if the MBT trainers would do any good for people with this condition. I've heard that first it is not very comfortable to walk with them, but when you get used to them they are the only shoes you want to walk with. There was a doctor in ER wearing them and she told me that she feels like flying when she has them on. For me I've noticed that even high heels help me some what, I guess it is because the calve muscles contract more with them then with flat shoes.

anna 22 did you try the mini trampoline? Since I am also willing to try anything that doesn't involve drugs I got the mini trampoline. I've tried it a few times and it feels good, sometimes I don't bounce I just walk in place just to get myself moving. I don't feel going for a walk alone and since most of the times I don't have anyone to go with me this is a substitute for that. It is still too early to tell if that makes any difference, but I don't think that it will do any damage. Rebounding is considered one of the most perfect forms of exercise so I figured why not

I am trying to get as much information as I can about this disorder. Since I have not been officially diagnosed and probably will have to wait much longer, because the health sector isn't the strongest here in Ireland I want to be as much educated about this as I can. So I feel that I have some degree of blood pooling in my legs, because if I sit still my feet get purplish red. I also have ache in my calves and since no doctor can explain me why I am having it I assume that it will be part of the blood pooling too. If I understand correctly this happens because the valves don't close properly and the blood leaks back down instead of going back up to the heart. So my question is about the recovery. If someone with POTS also has blood pooling how can one hope for recovery. Is the blood pooling curable. I know that this question might not be the most serious one, but it seems that after finding a lot of info on this website I still get these kind of questions once in a while and I can't find the answers for them. So I thought I'll just ask

I don't know what I would do without beta blockers. I am taking bisoprolol 1.25 mg per day at the moment, although it is the smalest dose one can be given at the moment it is enough for me. A couple of months ago when I had an emergency visit to the hospital I was taken off of the drugs to reduce my heart rate, because the doctors thought they might have caused the episode of severe tachycardia. I was without beta blockers for one week, and I felt totally miserable tachycardia, short of breath, very anxious. I was afraid to move, because it seemed to me that every move caused my heart to race. So even though I hate taking drugs I am more a natural medicine person, I can't manage without my daily dose of beta blockers.

I also get bright light flash once in a while in the outer corners of my eyes. I don't know what is that and if that's POTS related, I've read somewhere that with anxiety it is common to get light flashes. Another weird symptom is that when I gently pull down my lower eye lid it seems that the same outer corner of the eyeball is retaining liquid or something like that. Well at least it doesn't look as smooth, nice and round as my husband's. I know that it probably sounds terrible, but it's just very hard to explain something like that

Hi, I also took a peek at YAZ exercise website the one that doesn't display images. I don't think that this is what people with orthostatic intolerance need, most of the exercises are for upper body part and as I've read it is recommended to strenghten the lower body part more. Especially the military press, in my opinion this would make many people more dizzy and lightheaded. I In my opinion more stability improving exercises on bosu or stability ball would be much better. I don't say that YAZ exercises are of no value they are general exercises that every PT would teach you.