Radha

i cant imagine how awful it must be for you without any support, this illness is terrible and we all need so much love and compassion, i am sorry that you dont have this, but people in this group are very understanding and here to help, hang in there radha

i tried epogen a while ago, it didnt help or hurt me, maybe coz i am not anemic? radha

what is the diagnostic criteria for autonomic neuropathy? anything that stands out with this? thanks radha

thanks for letting me know that blood volume can go down even further than it was, and yes i am feeling worse especially eating is getting harder and harder, more hyper when i eat and more severe squeezing pressure headaches after even little food, i read that epinephrine is responsible for all this, in response to lack of blood going to brain, which would be true since blood goes to stomach when we eat, thanks for your replies, i cant get tested again now anyway, but i really think i have less blood, but where are we losing it? radha

after you have been tested and found to have low blood volume can it go down even further? are there any signs or symptoms that would indicate your blood volume is going even further down without actually being tested again? i really think mine is going even lower, thanks for any input, radha

i have alot of congestion in nose and throat, very stuffed up when i get an adrenaline rush, but my mouth doesnt get dry, i actually have too much saliva!! hate that! like constant drooling until the episode passes, and the whole episode is so exhausting since i cant stop fidgeting and moving when i get so hyper, the beta blockers do help with the palpitations and heart rate but not the hyper jittery feeling, wish i could offer some helpful advice, radha

thanks for replying and letting me know its worth all the money for the resperate, take care radha

is lyrica just for nerve pain or any kind of pain, like bone? thanks radha

i am going to say clearly that i have increased my dose of beta blockers when i was feeling worse and that is my decision, and i didnt suffer any problems because of it, of course you should use caution and do what is right for you, but i know i like to hear personal experiences too without all the extra advice! i know that everyone means well, but sometimes we just need and want a direct answer. then its up to us what to do next, radha

yes my blood pressure and pulse can be ok and i can still feel terrible! who knows why? hope you get something to help you feel better, take care radha

actually there are times i have difficulty just getting a deep breath, and then other times breathing too fast, i use oxygen at home and that does seem to help, i was looking at the resperate but it is so expensive, do you really think its worth it? thanks again for all your concern and ideas, i cant tell you how much i appreciate all your help radha

thanks so much to all of you for your suggestions, i really appreciate it, i wish you all well and hope you get some relief soon, yes when my heart rate slows down the breathing slows down too, i am not panicked or upset at the time, i will look into the resperate machine, thanks again radha

just wanted to say i hope you feel better soon and that you dont have to go to the hospital, its terrible catching something on top of already having POTS, wishing you well radha

when i get a hyper, adrenaline surge, i have a very hard problem, hard time handling the fast breathing like you are running, but i am just lying down, i try to distract myself and take deep slow breaths but nothing helps, any suggestions or ways to help slow it down quicker? thanks, this is really exhausting! radha

so happy that you are getting better, hope it continues!! radha

how much mag glycinate do you take? thanks radha

i am bedridden and it is terrible, i use my lap top computer alot, read and watch t.v. when i can, and like to cut out pictures and good quotes from magazines and make collages, and color with colored pencils, but i am most of the time too foggy and too exhausted to do much of anything, and also too hyper to concentrate on anything for very long, radha

what are fish mouth scars? and can you get eds without any other family member having any symptoms? thanks for any info, radha

i take high dose of beta blockers and no change in the blood pooling, i wish i could say it helped this problem!! radha

thanks for all your replies and for the link, but i am totally confused! no one in my family has symptoms and parents dont have any form of it, could i still have it? thanks for any help! radha

i take very high doses of atenolol, toprol, and propranolol and the strange thing is the higher dose i take the higher my bp goes!! now its just about in normal range, wish i knew why this is happening, toprol 50 mg, atenolol 50mg with propranolol 25mg, and then same dose at nite radha

i was wondering if you could have EDS, like the classic type and not have any history of this disease in your family, could it just pop up in the middle of your life, or do you have to have symptoms of it since birth? any info would be appreciated, thanks, and i have already looked at the main EDS website, radha

thanks so much for the info sophia, take care radha

i get chapped lips, but i also get way too much drooling, saliva and mucus in my nose and throat when i eat even alittle food which then makes me cough and feel like i am choking on all the extra mucus! i hate going thru this everytime i eat!! i am looking for meds to dry me up!! antihistamines dont help, but sophia, i have a question about the DDVAP, so i would really appreciate any input, do you only take it as necessary and not daily? and do you have to have regular blood tests while on it? and what dose do you take? thanks radha

can anyone explain what the difference is between adrenaline, epinephrine and norepinephrine?? are they all the same? thanks for any info, Radha