Radha

i cant thank all of you enough for taking the time to reply, i have tried small meals, no sugar, no caffeine, low carb, still doesnt matter same episode everytime, and so little food triggers it and so i am very skinny but always hungry because just cannot handle all the wide range of symptoms and also terrible headaches, i did look into dumping syndrome which sounds like a possiblity but there doesnt seem to be any fix for that. if any of you ever hear of any treatment or causes or any ideas at all, please let me know, and thanks lindajoy for your private post, radha

thanks for your replies, and i never touch nutrasweet and it happens every time i eat, doesnt matter what food it is, and i also stay away from sugar and high carbs, this is just so miserable and makes eating so so impossible! do you take anything other than beta blockers and maybe xanax which i dont want to start since i already take so many other meds, thanks for any input Radha

i think this topic was brought up before, so sorry if i am just asking the same thing, but can just eating a small amount of food, no caffeine or sugar, or lots of carbs, can it bring on an adrenaline rush and all the symptoms similar to a panic attack? and can an adrenaline rush cause a squeezing headache? thanks for any input and experiences that you had with this, Radha

thanks so much to all of you for your input, i cant return since its opened and really regret buying it, just wasted $30! i didnt know anything yin, so thanks to all of you for your help Radha

has anyone tried Earth Dragon by allegy research group? its supposed to help balance out the autonomic nervous system, but not sure how, and did it help and how long did you take it? i just took one and got a terrible different kind of headache which i was not expecting! thanks for any info Radha

this happens everytime i eat, along with an adrenaline rush and needles in fingertips, and tips get bright red, and i couldnt possibly eat any less! have any of you asked any doctor why this cold feeling happens? and anything to help it? thanks for your replies Radha

do any of you get colder and colder and trembling as you eat and finally have goosebumps all over? i would think this would be related to the blood pooling when eating and low blood volume? any input would be appreciated, thanks Radha

yes eating is nothing less than a nightmare for me, i am so hungry all the time but my body will only let me so so little and get so sick during and afterwards, terrible pressure headaches, get adrenaline rushes, bloated, too much blood pooling, and just feeling terrible, so hyper and exhausted, i cant eat anything with fat or sugar, i do take alot of beta blockers which help control the palpitations but thats all they do, wish i could be more helpful, just wanted to say i totally understand! Radha

when i said turn , i meant me turning in bed, not the mattress! sorry i didnt make myself more clear. so softer the better then? radha

if its hard to turn then i dont think i would want to get a memory foam pad, tempurpedic is memory foam right? my mattress right now is medium firm and i have a regular soft mattress pad on top, i guess i will stick with this until i hear of something better suited to my needs, its just that the hip and back pain is so bad! thanks for all your replies, radha

i am already taking alot of beta blockers and magnesium supplements too, thanks so much for replying at least i dont feel so alone with this problem, wishing all of you well radha

wow! its so great to know i am not the only one, but this problem really really interferes with daily life, my mom who is my primary caregiver is so understanding, i have told her to just not talk to me at all because i just cannot stand getting startled because it takes so so long to calm down again and if happens even few times, i get very emotional, angry and even cry. and if she does have to tell me something i need her to put her finger up and give me plenty of warning, its that bad, and i cant handle a normal conversation with anyone in person or on phone for fear they will talk suddenly, even if its not shouting, is there anything other than drugging yourself with tons of xanax or valium to help this? thanks again for all your replies, radha

sorry if this question has been asked before, but what mattress or mattress topper pad would you recommend for EDS pain, especially bad spine and back pain, would a softer or firmer mattress be better for the pain and i have heard about the memory foam and temperpedic, but arent those too soft? any recommendations would help! thanks radha

do any of you get startled very very easily, i mean when someone just talks suddenly even if they are not talking loudly, or if you hear a sudden noice and its not even that loud?? i always feel like i am about to jump out of my skin, and it just feels so so terrible and i cant even have a normal conversation with anyone for fear they will just talk suddenly! and when i get tense and startled, it takes a while to calm down and relax again, is this a part of POTS, is there any scientific reasoning for this? i would really appreciate any input, thanks radha

thanks so much for all your input, it doesnt sound like something i want to try! thanks again, radha

have any of you tried buspar for anxiety and did you have to take daily or just when needed and was it addictive or hard to stop it, and any bad side effects you experienced? i was considering it since it seems to be less addictive than xanax, thanks for any input, radha

melanie, i would love to hear your ideas on how you deal with depression! i know i have a hard time sometimes coping with the depression being so sick all the time and not having any idea when or if things will get better, any help would be appreciated, thanks radha

have any of u tried olanzapine for anxiety or the adrenaline surges? did u think it helped better than something like xanax and did u take just when needed? thanks for any info, radha

so sorry to hear you are suffering so so much, of course you have every right to vent, and its not complaining or whining, you should be commended for just coping with all of it! do you have strong enough pain medicine? i can definately understand about all of it, the blurry eyes, having to lie down after eating, the terrible bone pain and spine pain that feels like it will just rip thru your skin, i have lyme and EDS i take oxycontin which does help although i cant take more than a very small dose since it makes me too lightheaded, i hope you can try it, and i really hope you get some relief soon, i know it is a huge mental strain when your body feels so bad, hang in there, radha

i dont have heart failure, but i just wanted it to make my heart stronger and help with any palpitations, but still dont know if its right for me, but thanks for all your help radha

for those of you who have tried hawthorn, did it help and how did it help, and if you already have low bp would it be a bad idea taking it even if you have a problem with palpitations and tachycardia? would it lower it too much? any input would be appreciated, thanks and would it interfere with beta blockers or digoxin? thanks again radha

for those of you who has a drop in bp after eating how much did it drop and how soon after eating? thanks radha

will epogen help if your red blood cell volume is normal but total volume is low? thanks for any help radha

because of such difficulty with eating and blood pooling i was thinking about asking my doc to prescribe octreotide, but i was wondering if any of you knew if it was ok and safe to take this daily for long term basis? or is it only used for short time period? and if any of you did take it, did it help with eating or in any other way? thanks for any input radha

i am so so sorry for your loss and cant imagine what you are going thru, my mom is my whole world so i cant imagine the pain you must be going thru, i dont know how close you were , but the passing of a parent is always a terrible ordeal and i hope you find the strength to cope during this difficult time, radha