Radha

thats nice that are good POTS doctors, but after going to these places and getting all the sophisticated testing and getting the diagnosis, did you come home actually much better than before you left? did it really make a major difference in your quality of living? radha

i never eat sugar or take in caffeine, and i already take alot of oils, but i didnt get these hyper , not being able to concentrate,talking too much episodes before i had POTS, so i wonder ifs a part of POTS or ADD, thanks for any info, radha

yes i know what you mean, i have trouble getting a deep breath at times and i take beta blockers too, its a miserable feeling, but when i inhale my oxygen, i have my own tank at home, it helps sometimes, maybe you could ask your doc about renting them from a surgical supply store, the oxygen helps alot of my symptoms, radha

sometimes i wonder if i may have ADD, because at times i get so hyper and cant shut my brain off, thoughts just running a mile a minute and so scattered that i cant concentrate on a t.v. program or a book i'm reading, its very frustrating and i feel so bad talking so much at those times and just being such a nag to my mom, although God bless her she is so patient with me, nevertheless i hate asking her so many questions and just being a pest, although she never says that, anyway, i wanted to know if there are any natural alternatives to adderral or ritalin to calm the mind down so i can focus when i get these episodes? thanks, i just cant seem to shut my mind off at times, and it makes me so angry, and i cant meditate! radha

i only drink salt water, and Dasani purified water enhanced with minerals, since i stopped drinking plain tap water i notice i hold onto my fluids better and dont pee as much or have that urgent feeling like i cant hold it, guess it has to do with an electrolyte imbalance, radha

i think i get them between 3-6 a.m and i'm very cold when i get the sweating, and i feel sicker the rest of the day, i had a normal TSH, but hoping to get more thyroid tests done, thanks to all for replying, take care radha

i'm only 28, so its not early menopause and i dont take any anti depressants, so its not that, no anti anxiety stuff either, and yes if i go into a deep sleep when i nap which is rare, i do sometimes sweat, but not as common as in the night, i cant take any antibiotics coz i herx too bad, and my body just cant take feeling even worse, so right now i'm stuck with whatever bugs are inside me! thanks to all for replying, so i guess i'll never know if its the bugs or POTS, radha

i get very bad night sweats when i am in deep sleep, and then i feel dyhydrated and tachy the next day if sweat too much,coz blood volume changes and feel sick all day, drained and flu like, and definately dont feel like i slept at all, sometimes i think its better if i just stay awake, but thats bad too, either way i lose, anyway, how do i know if the sweating in sleep is coz of a fever or the POTS? i know i have chronic infections going on too, thanks for any input, take care radha

i know how u feel about the normal results amy, it is baffling when you feel so terrible for every test to be normal, when other people who are much healthier and stronger than us get abnormal results when they were not even expecting it! i dont want to be sick but i want validation and proof of how terrible i feel, just wanted to add that i know how u feel, take care and wish you the best, radha

the rheumatologist i saw didnt really even consider the possibility of EDS, he just said there's no treatment for it and dismissed my question, i live in a small town and no one really to ask about this, so how do i find out if i have EDS? so confused, and cant travel, thanks radha

could you have a normal T3, T4, and normal TSH, but still have elevated thyroid antibodies? thanks radha

i had a terrible experience with a doctor who came to my home to see me today, i was so devastated by what he said and how he dismissed me, i had been waiting for weeks for him to make a house call, and i had been so excited and thankful that he was coming to my home, but i was shocked by what he said, he's a rheumatologist, and i wanted him to give me something for the painful joint pain, but after seeing me, he just kept saying over and over how skinny and weak i looked and that this wasnt an arthritis problem, that i should see a psychiatrist and he thought i had an eating disorder coz of how little i was eating, i was in shock and said that there was no possibillty i had any eating disorder, that i wanted to eat so badly but how hard it is for me to eat, how many problems it causes, but he didnt beleive me and then he went to talk to my parents alone and i was so stressed out worrying that my parents might beleive what he says and admit me somewhere without my consent, well thank God they supported me and didnt beleive what he said, but i was still so upset, why cant these doctors just say they dont know? he didnt even look at my swollen hip, just kept harping on how skinny i looked, anyway thanks for listening, i dont know what to do anymore, which direction to go, i cant tolerate any abx, and too much pain, no relief, cant eat, cant sleep, radha

i want to increase my dose of beta blocker, i take toprol 25 mg, and want to add a little atenolol to control the tachy feeling, but doc says i have to have a holter monitor or event monitor to justify increasing, but last holter monitor results were normal, but i hate having that adrenaline feeling, and the forceful beating in my head after eating or changing positions, it may not always be fast but the beats are very forceful at times and make me hyper and jumpy, and i hate that, food definately triggers this, making it so hard to eat anything, will the event monitor show forceful beats even if they are not too fast, and would increasing the beta blocker help this adrenaline and forceful beating problem? i am so tired of normal results when i feel so so terrible, thanks for any help radha

its a relief to hear i'm not the only one! i''m always stuffed up, nose so congested, and having to constantly clear my throat, especially when lying down or after eating and i sweat very easily and bad in the night, and when i get panicky, and yes i have alot of vaginal discharge, wish there was something to help all this, the antihistamines dont make a big difference, radha

yes carbs and sugar definately makes my heart race and too much of any food in general, eating is a huge problem for me and triggers my heart so easily, and yes i have to lean forward too, if my head tilts back even a little or my back is too straight, my heart beats so hard in my head, but i dont faint, i just worry that i will have a hunchback! radha

can anyone tell me how EDS is diagnosed? and what treatment helps? what does loose joints mean? i have very stiff painful joints, thanks for any info, take care and sending loving thoughts to all of you, radha

i dont take ultram coz it makes me too wired, and keeps me awake when i want to sleep, hope this helped alittle radha

thanks so much for all the input, i will try to get my doc to get the t3 and t4 tests done, mine is 1.3, and well i have so many symptoms of hyper, thanks again for replying, i really appreciate it, radha

congratulaions nina, you should be very proud of yourself for working so hard, thanks for helping all of us, radha

have any of you had symptoms of thyroid problems but had normal TSH only to find out you really did have a thyroid problem? i have alot of symptoms of hyper, but normal TSH and wondering if its worth pursuing, i used to be cold all the time, now i'm so hot! and i'm even skinnier! thanks for any input radha

how much are you taking and how often? what brand? glad you are feeling better! radha

hi julie, could you please tell me what kind of symptoms your cervical problems cause? i dont think i have the chiari, but i do have alot headaches and neck pain, and bulging of spine in places, thanks radha

i think its terrible how you were treated and i'm sorry you had to go thruu that, i have had miserable experiences with doctors too, where they thought it was in my head, the worst part was that my family believed the doctors, it took a long time for my family to realize that i was really physically sick, i still feel like i have to prove to people how sick i am, anyway, i have terrible hip pain too, take codeine, darvocet, bextra, all the anti inflammatories, no relief, is there any med other than neurontin which i tried that really helps the joint pain? i cant sleep at nite, thanks and hang in there all of you! i love being a part of this group! radha

do any of you notice after a while that the beta blocker you are taking doesnt work as well at controling your symptoms? have any of you tried rotating different ones, taking one for a certain amount of time, then switching to another when you feel its not working as well? is this harmful to heart? i'm talking about switching from toprol to atenolol and to propranolol, the toprol is helping like it used to, thanks for any input radha

i dont actually pass out, but get periods of drunken symptoms, and i hate it! slurred speech and just so spacey, and so foggy, wish i knew how to prevent it or make it go away faster, radha