Radha

Gayle, how were you diagnosed with your thyroid? are you hyper or hypo? i have had repeated TSH tests that are normal but i have so many symptoms of hyper, what is subclinical mean? thanks

radha

yes i have adrenal insufficiency and POTS, take cortef just 5mg coz i cant walk and dont want my bones to get any thinner, and i have very low blood pressure,

radha

wishing you all the best, and i can understand your worries, i worry alot too!

radha

i do word finds too, cant do crossword puzzles, they take too much concentration and with all the brain fog, they just frustrate me! yes i also get frustrated when trying to meditate, coz when i focus on my breath, i automatically breathe too deeply and that makes me tacky, and i can relate to reversed sleep rhythms, being too exhausted to sleep and then feeling miserable during the day, the more you lose sleep the harder it is to fall asleep, its like i get more and more wired! and being able to think more clearly in the middle of the nite than in the morning makes life very hard! hope all of you get some sleep tonight, just wanted to add that i understand and that everyone should feel free to express any thoughts and concerns,

radha

well i took the vistaril and had a miserable experience, terrible stomach cramps, rapid heartbeat, more dizzy, and definately not drowsy! thanks michelle for emailing me about your experience, i am also very sensitive to meds and dread trying anything new since i usually have a bad reaction, thanks to all for your replies, i hate wasting a whole bottle of pills when all i took was one, but i know no one will take a bottle of pills since we cant trust anyone these days!,

radha

thanks so much for takkng the time to reply, wishing warm thoughts to all of you!

radha

have any of you tried vistaril and how did it help and how long did you take it? any problems while taking it? i read it helps for anxiety and congestion, both of which i have, thanks

take care all

radha

so sorry to hear about all your troubles, my heart goes out to you, i'm not a mother, but it must be terrible watching someone so young suffer so much, hope things improve for the both of you

radha

thanks so much for all your reassuring words, my mom says too that its too hard to imagine being healthy and independent now since its been so so long and coz i'm such bad shape, but then when time comes that i get better, then i will adjust to that too, it will just come naturally, i pray she's right!

radha

do any of you know of a doctor who would do a phone consult and possibly treat without seeing me? there is no way i can travel now and cannot find a doctor close by who is knowledgable about POTS, thanks

radha

im so glad that i can post replies again! the forum wouldnt let me for past 2 weeks! anyway, i wanted to commend you also on what a great mom you are, i'm bedridden and my mom is my primary caregiver and she is a godsend, my best friend, counselor, mother, my angel, i dont know how i'd survive without her, actually i wonder if any of you get panicked and stressed about the worry that you wouldnt be able to survive if something happened to the person you are depending on for every little thing, my mom's love and support is what keeps me going and i sometimes get very worried how i could survive if anything happened to her she is healthy now, but you never know what could happen, i tell myself this is no way to live, worrying about what might happen, but still when you are depending on someone else and are so used to them, its scarey to think how you would survive without them, i mean no one is going to love u and be so dedicated to you like your mom! not anyone you hire anyway, thanks for listening,and i hope that nicole gets some relief soon,

radha

this is not medical question but one that causes me alot of worry and wondered if any of you ever felt this way too, i want to get better, be healthy and independent more than anything, but after being sick and totally dependent for every little need for so many years i dont remember how it feels to walk and be healthy and in order to survive i have had to adjust to this life of pain and dependency. Now even though i dont see myself getting better in near future, i still worry and get very anxious about the thought of being healthy because it is the unknown and i'm sorry to say comfortable being so sick even though i hate it, and wondered how i can overcome this fear or deal with it so that when i do actually get the right treatment and get better, there wont be any fears holding me back, i'm so used to getting so much attention and sympathy and used to being so dependent and the thought of change scares me, counselors have told me this is normal to feel this way after being sick so long, but still i dont want to have any fears and well do of any of you know to deal with it? thanks so much for all your support,

radha

dfg

was just reading all your posts, and thinking what a wonderful group of people you all are, i dont have anything to add that someone hasnt said before, just that i understand completely and think this sadness we feel is the same as when we grieve when we lose someone very close to us, we have lost so much and we cant help but grieve at times, its not realistic to be hopeful and grateful all the time, even though we have to be those things too, sometimes i know i get sick of feeling grateful for all i have, and just want what i dont have! but then i try to refocus my thoughts back to all the love and support i have, being in a state of gratitude does help, sending warm thoughts to all of you

radha

sorry i meant briarrose!

thanks to all for your comfort, please could tearose post the info again about the doc in Syracuse who knows about low blood volume? thanks again to all of you for caring,

radha

just wanted to share how frustrating it is when you feel so terrible and blood tests come back normal, i know i shouldnt doubt myself, i know how sick i am, and its just that they are not testing for the right thing, but still its frustrating when things come back normal and we feel so very far from normal! and i hate telling relatives that they are normal, i know i shouldnt care what they think, but when you have physical proof of whats wrong with you, its just more validating, just wanted to share, thanks to all for being so supportive

radha

thanks everyone for replying, at least i know i'm not alone! take care and hugs to all!

radha

do any of you feel like you are going to pee in your pants even when the amount is not that much? i dont get this urgent sensation everyday, it seems to come and go, but its scarey since i cant get up to go myself, i have to wait for someone to help me, other times i can hold it, was wondering if Diabetes Insipidus might be a possibility but it doesnt come everyday, and even though i drink the same everyday, some days the out put is so much and other days, not much, its crazy trying to figure this out! but anyway do any of you know why or what to do about this urgent feeling? thanks

can you just take a beta blocker whenever u feel anxious? wouldnt it lower the BP too much if you had already taken your daily dose earlier?

radha

i think all of your responses are so accurate and so true, our ideas of how many accomplishments are acceptable and what makes us happy changes drastically after we get so sick, i know i have learned to try to be happy enjoying a specific food that i can tolerate and like! or looking forward to a comedy on T.V. we have to alter our perspective if we are to survive,

radha

can any of you recommend which meds or inhalers help best for the cough that's caused by the sinus congestion dripping into the throat and thats worse at night? i already tried all the usual decongestants and claritin and zyrtec, thanks

radha

i can relate too to the anxiety, wish i had some helpful hints, its a miserable feelings, but know that you are not alone and it does ease, hang in there,

radha

the blood volume test is a specific test they do in the hospital after injecting you with a dye, its done in the nuclear medicine dept of the hospital, maybe you could call that dept and ask,

radha

sorry to hear you are having such a rough time danielle, everyday is bad for me, coz i have many different problems and symptoms, thank God for my parents who are so understanding and supportive, i hope you have some good support to lean on, stacey u mentioned TPN, what is that? i have a major problem eating too, all we can do is take it one day at a time, or even hour at a time!

radha