Radha

i thank you all enough for your kindness and concern, i live in elmira, N.Y. its upstate, if i can get my doctor to respond one of these days, i will consider the florinef, i hestitate since i have heard so many horror stories about it, how bad it is getting off it, and side effects, but will keep in mind and will try licorice again, thanks so so so so much for being there!, lots of love to all of you! radha

could you please post the phone number and cost of the cell salts? thanks so much and yes i'm a night owl too, all day is bad but the mornings are the worst! radha

thanks to all of you for caring and replying, i tried the licorice awhile ago, kept increasing but no relief, it was a powder, maybe will try again, can anyone recommend a good effective brand? and i found out i had low blood volume by having the test done by nuclear medicine few years back, and i did try the epogen shots, but without the IV iron, i dont think my doc will let me get IV anything at home, she has some knowledge about POTS but is terrilble about getting back to me about anything, never replies, i call and call, but nothing, very frustrated, tried to find another doc in area, but few taking new patients wont come to my home, and i havent walked since 96, i was able to go out little in wheelchair then, but now cant leave home at all, and sit up in bed or on sofa with legs elevated, i didnt try hose coz i cant stand at all, i drink lot of water and eat ton of salt, want to try so many things, wish dr. grubb would do a phone consult and prescribe adderral, or something, i cant eat, cant sleep, always in pain, wondering if i may have lupus, or psoriasis coz of these flaky rashes on face, and well, i just dont know........i feel so grateful to have all of you, and i learn so much from all you, wishing you all a good nite, radha

nite sweats sound common in POTS, i get those every nite and bad too, which makes me feel even weaker and more lightheaded in the morning, i thought this was a sign of my infections but could it just be a part of the ANS dysfunction? thanks radha

can bad stiff swollen joints be a part of POTS or is that part of something else? i just wonder if i have something else like lupus or psoriasis going on since i get the flaky red skin on my face and bad pain too but had negative ANA and not sure whats going on, anyway thanks for any input, radha

what brand of licorice do all of you use? the last one i tried a while back didnt help raise my BP at all, thanks and please let me know where i can get it, radha

oh and does anyone know what causes low blood volume?

i eat more than the 10 grams of salt recommended, and i havent gotten the hose because i cant walk or stand at all, i can sit up but keep legs propped up all day, coz hanging them down just makes my feet purple and veins bulge, i did try licorice while ago but didnt help, maybe will try again and havent tried florinef coz i already have bad headaches, thanks for all your input, radha

do any of you know any thing that will help low blood volume other than lots of fluids and salt? i feel so weak and not even alive most of the time, thanks, radha

thanks so much for all your replies, and nina the info u posted about enbrel and why midodrine didnt work for me was much appreciated, i appreciate all your responses, thanks so much for being there, its very frustrating when your doc wont get back to you even after months of calling! guess either she doesnt know or just is fed up since nothing helps me! but i cant seem to find anyone better in my area, anyway, was wondering if Dr. Grubb would do a phone consult? i hear such great things about him, i know docs dont usually prescribe without seeing patient, radha

briarrose, did you have low iron levels? i took epogen for 4 months and felt no relief and no increase in BP, but i didnt take IV iron and dont think i was anemic, but not sure, anyway, i know my doc wont try it again, radha

i'm taking digoxin and toprol, cortef for adrenal problems, not enough cortef i think, and lots of pain meds and want to try enbrel for psoriatic arthritis, but have weak immune system, lots of infections, and cant get my doc to prescribe it, lots of things i want to try but doc doesnt respond and i'm bedridden and cant travel, anyway, if anyone feels better with mestinon or anything else, i'd love to know, thanks radha

does anyone know why midodrine raises BP for some and not for others? it didnt raise mine, and how long did it take to feel a difference? thanks Radha

thanks everyone for your input, no i dont have trouble swallowing and no heartburn and it doesnt matter if i lie down or sit up after eating, always have to clear throat for awhile, like post nasal drip or mucus sticking to back of throat, i also have very bad chronic sinus congestion which nothing alleviates, dont think its allergy related, but coughing makes heart rate go up for me, anyway, i'm glad i have all of you to turn to Radha

could you please tell me where you got your cell salts opus? and the price and how much you have to take, i also have problems with dehydration and urinating alot, and low BP, thanks for your help! Radha

hey,sorry to be posting so many questions, just wondering if any of you feel like you have to clear your throat and cough after eating, i have this problem after eating anything and its worse when i lie down, after about an hour it gets better, i'mso scared to cough since that will trigger the tachycardia, and is there anything that might help avoid this, other than not eating and sucking on lozenges, or could this be allergy related? but i notice its worse after eating, thanks for any input,

have any of you taken cell salts? its a homepathic remedy, and if you did how did it help and what dose? i think someone mentioned it helped with raising BP? mine is very low, thanks for any help radha

was wondering if Mestinon helped anyone and how it helped, what symptoms it helps, i'm thinking of trying it, and what dose you took and how long it took to feel better, thanks for any feedback, radha

thanks everyone for your concern and replying, it didnt help before, but i'm desperate so thinking of giving it another try, radha

thanks everyone for taking the time to reply, i love being a part of this group!! Radha

i tried midodrine few years back, with no relief, BP didnt increase at all, was wondering if it was worth trying again, or if it didnt help before, then does that mean it wont help ever? and what dose do all of you take? i kept increasing but no help, thanks radha

like Blackwolf, i have a paper with me at all times to write down little notes, since i'm so obsessive about not forgetting one single thought! my poor mom has to listen to me all day, saying many things repeatedly, but thank God she is so patient, and yes like Emily, i find i talk more and mind races more , the more exhausted i am.........its nice to know others can relate! thanks so much for replying, i guess its just another part of this complex illness!!

do you have any ideas on how to help stop your mind from racing? i tried meditation, cant do it! try to distract myself with t.v. and write stuff down, but any other ideas? i hate it when i cant shut off my brain so i can just relax and be at peace in the moment, or but just sleep! feel so wired! but exhausted!

i notice i get bad pumping and fast heart rate when i arch my back or tilt my head back, its better when i hunch forward, do any of you experience this? and is this a sign of chiari malformation? thanks for any input. any solution to help this? my lower back is really in bad shape since i have to hunch over.

I dont use oxygen usually because of breathing difficulties, more for the rapid pulse or brain fog, but was wondering if this helps anyone else with these symptoms, i also take toprol and digoxin, thanks for replying radha