Radha

thanks to all of you for replying, and especially to tearose for your special words of encouragement and making me feel useful! i am in process of trying to finish my bachelor's degree, its going very very slow, so will try to take another class from home, not sure what to major in, that would offer some kind of career when i get better, than i could do from home, but thanks for all your input, and if any of think of any more ideas on how to contribute to society, please let me know, my hands get very tired, so sewing or knitting isnt possible, radha

i find i have to rotate them when they arent as effective at controlling the tachycardia, but i notice the toprol, since its time released, does a better job of keeping my bp from changing so drastically, it keeps it more stable, even if its low, it doesnt jump around so much, but i still need to take a little of atenolol, like half tablet to help control the harder beating, hope i helped!, i need to rotate them to keep them working, radha

thanks for your suggestions, do you know of non profit organizations that would need help? i cant talk on phone, get out of breath easily, but appreciate any help, thanks! radha

i know its not our fault that we cant function as we would like, in my case, i cant do much of anything, even reading or watching t.v. is a major endeavor, but i often feel like i'm just existing, not accomplishing anything, even though i know i'm not lazy,anyway, i'm sure many of you can relate to feeling useless, like everyday goes by in a haze of pain and suffering, without anything meaningful happening in our lives, how to deal with these feelings? how can i feel more useful? like i'm making a difference in some way, maybe in another's life? is there anywhere to volunteer without actually going there? or simple jobs? i'm not interested in making alot of money, or any money at all, just to feel i'm doing something!, thanks, wishing you all a decent nite! radha

many of you mention IV fluids, i know that drinking so much salt water still doesnt feel like it gives relief, and want to try the IV, but heard the tube thats inserted can get infected easily, and thats what worries me, about getting the fluids at home, does this happen often and are there other things to worry about when having an IV at home? thanks radha

so if you have low bp, then clonidine isnt recommended? or can it still be used to stabilize bp so it doesnt jump all over the place, and control the tachycardia? thanks, thinking of trying this, but already have low bp, radha

getting shaky and anxious and tachy after eating isnt due to low blood sugar for me, but i cant say for sure for you, but it always happens for me after eating, anyway, was wondering is there any other meds other than xanax and beta blockers to counteract this adrenaline feeling? to tone it down? hang in there!, sending warm thoughts to all of you, radha

i have many of the symptoms, and eating makes them even worse, but i dont have high blood pressure, i get very agitated and anxious after eating, and cant shut up! radha

yes i get shaky and irritable, and very weak and lightheaded, and the late night is best time for me, mornings i dread! radha

does anyone know of a good article explaining how epogen helps those of us with total low blood volume , not just low red cell mass? i want to have some scientific proof to show my doc to try and convince him to let me try the epogen, i dont have anemia, thanks radha

yes rolling my neck definately triggers symptoms of dizziness, harder beating in head which is painful but it feels good when i crack it! and tilting head back also makes me worse, radha

i took toprol for a while and it helped in the beginning, but over time, lost its effect, so now back to taking atenolol which i took years ago and it definately makes a difference in tachycardia, but i guess when it loses its effect will have to switch to something else, they dont eliminate the harder beating or faster pulse but they definately help and i couldnt manage without them, and i have to be extra careful about how much i take coz i have low bp, and someone mentioned a high dose of b6, how much did you take and how often? thanks radha

i also feel better when i dont sleep and dont eat, pretty screwed up right? wish i had a remedy that would give immediate relief, just try to remember that the feelings of hopelessness and depression will lift, even if the physical stuff doesnt change, hang in there, radha

sorry to hear about what you went thru, we already have enough to deal with being sick with a complex misunderstood illness and then we have to deal with doctors who treat us so terribly, just wanted to say i know what you are going thru and i am so angry about what happened, hope you find someone better soon, maybe this happened for a good reason, i guess we have to try to find the bright side, maybe someone better will come along, hang in there radha

what is a cpap machine, is it like an air purifier or ionizer? radha

thanks to all of you for your valuable input, its very confusing! i have symptoms of both, have sweaty extremities, terrible headaches, anxiety, but low bp, so i dont know either, and i cant have that blood test done since i cant stand at all, so i guess i will just have to live with unanswered questions, thanks again to all of you for taking the time to explain things, radha

i cant stand at all, so i dont know how i would be able to get this test done,anyway knowing you have the hyeradrenergic POTs, would that make a difference in treatment? radha

is there any test to confirm you have a mast cell disorder? radha

is there a specific test to confirm this hyperadrenergic POTS? a blood test? thanks for all the info! radha

does anyone know exactly why some of us get the harder beating or faster heart rate after eating? does this only happen to those with the low blood volume, or is that irrevelant? do any of you know of a good article that explains why this happens? was just wondering so i could explain it if anyone asks.......thanks radha

how would you know if the POTS is hyperadrenergic or just plain POTS? what is the difference? and different symptoms to differentiate between two? thanks radha

i dont have many digestive problems, the main problem is the harder beating and the fast pulse, and yes i eat very small amounts and still get symptoms, but i still eat what i can, and i applaud all of you for handling all these difficulties so well, thanks so much for all your input, what exactly is ablation and how does it help and how do you get a doc to do it? thanks radha

yes i take meds for headaches, ultram, codeine, darvocet, even imitrex, not all at once of course! but many times once i put food in stomach then any relief of the drugs is gone, so its kind of useless taking the meds, and now after taking so long, the meds are not that effective, and i' worry that i will get addicted, not that i take them everyday, and only when pain is too severe, and its not always a rapid pulse, but sometimes a harder more forceful beating in my head, thats what is so painful, thanks so so much for all your replies, i feel so fortunate to have all of you and wish i was more help to all of you!, radha

and its not just the tachy and anxiety feeling after eating, many times i get such a severe headache too, thanks again for all your input, radha

i cant walk or stand at all, so a walk after eating is out of the question and this is one of the worst symptoms i have and its been gradually getting worse, just eating enough to stay alive i guess, until some new med comes along, its definately hard to watch all the commercials for all the food that i want to eat so bad, and poor mom wont ever eat in front of me, she wouldnt eat at all if it wasnt necessary for survival, it upsets her so much that i cant eat, thats the worst part, seeing how it affects your loved ones, thanks again for all your support, i appreciate it so much, for now all i have is my beta blockers, but have to be so careful since my bp is already low, radha