sunisshining

thanks guys, i have had my thyroid checked. and it's fine. i've had sooo much checked. i don't really want to ask for a tilt table test because these cardiologists already are annoyed with me. and i don't feel like more tests! grrfffhh! thanks for all of your replies and for your help! i'm sorry i have so many questions! i just love u all and it's wonderful to feel welcome here! because i know i'm not alone! keeping u all in my prayers, sun

Thanks, all! I'll keep all of this in mind. When i restart the lexapro, we'll see what happens. Maybe if that doesn't work i'll try zoloft..altho, some of you get sick from that one, too. i wonder if there are any that younger kids can tolerate well...maybe then we'd be able to tolerate them! oh well. thanks for all of your help. i kept down some plain tofu, rice, apple sauce, and banana. i'm vegan, by the way..i don't think i mentioned that. i became vegan furing 12th grade when i first got really sick - i could never stand milk or dairy stuff when i'd go through my sick times, and meat, even the smell of it turned me off. i never liked eggs. and then i realized, hey..i just need to leave out honey and i'll be vegan. so, i'm vegan...it happened naturally. and i have gotten my vitamins checked. i got anemic (am better from that now) but i don't think that was due to being vegan..it was probly due to not eating much at all for a long a long time! hugs to all! love u lotsnlots, sun btw what foods do you say help u? so once my stomach is healed, i can try those.

Hi, I so sorry that your son and your family has to go through this. As frustrated as your family is with how he has changed, i bet he is probably just as frustrated or more frustrated..maybe? i've been in a position where i've been so sick that i didn't have the energy to get out of bed, but i didn't want to go be around my family in such a sick state because i didn't want them to see me that way cause i didn't want them to get upset or mad or frustrated. Could this be a possibility for him? I know it was/has been hard for me as a teenaged girl, but i can't imagine how hard it would be for a boy, just because i think even more is expected of boys socially. they're expected to tough stuff out more, etc, etc. Maybe if you let him know (you probably already have) in an indirect way that you know he can't do as much but you still like his company. But don't tell him directly because then he will get more frustrated with how he can't do as much stuff. if your in his room with him, just tell him how you love being around him or you love his company..but not in a way that makes him feel guilty for being sick...uuuugggh..this is so hard. i'm trying to be helpful thinking back on my bad days...but i was sick and felt guilty, which i'm sure is how he's feeling. so it's like walking on ice or however that saying goes. but i know that a biggie for me is that when i was around other people, even my family, i felt like if i wasn't acting better than i felt, i was being a failure or upsetting them...even tho this was so not true. but i think this is probably what he's feeling. and having to act well is really draining when u r sick. so that's probably why he stays in his room. also, there's probably stuff in his room that comforts him and he knows it well and he feels like strangers who don't know what's going on with him are less likely to come in and he'll not have to act like he feels better than he is. i hope this makes sense. but it's not that he doesn't want to have fun or doesn't want to be around u. it's a frustrating situation for everyone. i know the times when i was really sick, everyone wanted one thing (for me to be like my healthy self, better) but because everyone was so scared, frustrated, upset....it led to tension and people feeling like other people desired more from each other (my parents felt guilty for not being able to do more and then would say "we're trying our hardest...") and i would get guilty for not being better and be like "i'm trying my hardest" and then i know the rest of my family disagreed/argued about the best way to treat me. my sister lost a patch of hair in the process...it's very stressful on the whole family. and there's not really a quick fix...maybe just knowing that everyone is trying his/her hardest and that no one should be blamed. i doubt your son wants to be a hermit and i doubt you want to have to be in a position of trying to get him out of his room, etc. Everyone misses the old him. i would say to set up an area by the kitchen with some of his stuff where he can rest but i don't know if this will work. i kind of know what u mean because before i got really sick, i would cook and help in the kitchen with my mom ALL the time. But we've grown as a family and now my parents are the one's saying "no, don't do that, you need to save energy. go rest." and i'm the one saying, "i feel yucky anyway so i may as well try to do this." obviously, tho, right now i'm not as sick as your son. i thin kyou'll all, especially your son, just have to lower your expectations, as hard as it is..because u think that lowering them is like surrendering. but it's not, it makes it more tolerable. i'll think about this more and post more or send u a message if i think of anything else. hope it helps to see if from the other perspective? or bird's eye view maybe? hugs! and good luck with the specialists...but your family needs to stay strong because doctors come and go, but love is one of the best medicines - you have it even when doctors don't help. love u lots and good luck! also..is your son a member of dyna? (dynakids.org) i just filled out the registration form..it looks really nice and helpful and supportive! good luck. i'm keeping you and your family in my prayers, sun

Hi Patti, Tell your daughter that I think she's awesome and brave! I'm a freshman at Stanford. I actually started here when i was not in a major pots hole. But, honestly, people are really understanding. There are always the people who will say "we're all tired" or "you sleep/rest more than anyone i know" but they don't say this because they mean to be insensitive, it's just because they don't know better and if you explain to them, they will understand more. I have suuuuuch great friends and to tell you the truth, I would HATE not being here because then there wouldn't be much to focus on other than feeling ill at times. I mean, there would be, but i think you know what i mean - i would feel out of the loop. I also think that it is a great way to spread the word about illnesses that the medical world doesn't know much about. i always think - what if, God forbid, something like this happens to one of their kids in the future? then they will remember me and know that not all illnesses have clear-cut answers... and to just keep pushing. Also, the next person they meet with something like this - they'll understand. And really, your daughter will be surprised to learn that most of the people she will meet know of someone who's been in a similar situation (one of my friends had a friend who was undiagnosed with gluten intolerance for 8 yrs, one who was sooo sick the first 7 yrs of his life until the dr.'s decided to try giving him a bone marrow transplant and now he's fine, not close to death!, a friend with ibs...etc, etc). But what is the best thing EVER, is that my friends know that i don't like to be ill (who does?) and i don't really like to talk about it and i don't want to be defined by it. They know that i like to have energy and laugh and smile and make people happy and have fun. in fact, my friend, who has an essay for her introsem due in under an hour just got back from a class, out of breath, and first thing she stopped in to see how i was doing. As long as you let your friends get to know you and not just your disease they are cool with that and they are really supportive. Some won't understand, but they don't understand most things, and i am glad i am not one of them. But we are still educating them and they don't mean to be insensitive, they just probly have their own issues going on. but, if your friends see you when you are well and when you are not well, they really do know that something is wrong with you and that it's not some imagined thing. they can just look at you and even if you try to say "oh, i'm feeling better" if you aren't, they pick up on it. And they don't know how to help your symptoms because they don't really know much about the condition (who does) and they wonder why doctors can't help more (they wish the dr.'s could and get frustrated at the doctor with you) but they do know that having them still treat you normally but realizing you are sick is the best medicine ever. I wake up to notes on my white board, people always ask me how i'm doing (and it took me 2 quarters to fess up the whole truth about how i feel - it took hitting a major pots hole to do this, so i'm not saying it's sooo easy!). But once you tell the truth, as long as u don't dwell on it, you get suuuuuuuuuch a great support system. I try telling people discretly tho, b/c then they know i don't want a lot of attn about it, i just want them to know that if i'm not as with-it, it's not cause i'm being anti-social, etc, and they all want to help sooooooooooooooooooo much, but don't dwell on it. this has gotten too long and i need to use my energy to study! Whatever the case...the bottom line is that it definitely won't be easy breezy, but the friends you make, the experiences you have, and how well your life can educate other people about these kinds of illnesses, the interesting classes, etc, etc - it all makes the struggles sooooo worth it. as i like to say (i don't know who said it originally), "the stronger the wind, the stronger the tree." she will love college! and i think it's AWESOME she decided to go. it can be difficult since college is an environment so focused on functioning, but she just needs to try not to compare herself to people without her condition...and realize that no one is perfect, even if people try to appear that way. and don't be shocked if she has times where she gets upset with how she's feeling and that she's missing out on stuff. it's natural, happens every once in a while with me when i'm feeling really sick. but not every day is like that! and it's soooooooooo much fun, even if u can't always particupate as much! hope this helps...i think i meant to say some other things but forgot what i was going to say and started to ramble. yay for your daughter! and i think that this is her only chance for college at this age..so this way, there won't be "what if's" love u lots! hugs, sun

Thanks Wareagle and Gena, I haven't had a tilt table test. that's what i was referred to cardiology for but they never gave me one. i don't know if they have one at Stanford. You'd think they would, but oh well. I have had an echo and ekg at children's hospital. fine except the echo showed something that the echo technician was telling thhe doctor something that looked like it indicated i had an innocent murmur. but she didn't really respond to him, and even if i did have that, it's innocent, so nothing's wrong. also, i have an echo scheduled for the 22nd of this month b4 my next cardioology visit..i don't wanna see those cardiologists again..but they want to do another echo even tho i had one done at children's across the bay. grr. also, i've had two holters and an ekg here. when i was sleeping, my pulse was fine but it was high pretty much throughout the day. there were some times when it was in the 80's but usually between 100 and sometimes even 150..i think it went to 180 once..if i remember correctly..maybe not. this is what i remember the cardiologist saying, so i might not have it all right if my memory is being bad. also, i do remember him saying something about sinus tachycardia. So, i just did the resting and standing pulse procedure that they have on DYNA. i don't have a bp cuff with me, but i did my pulse. After laying for 15 mins it was 85 beats per minute. after standing for one minute it was 115bpm. after two mins standing it was 116bpm. after 3mins standing it was 118bpm. then after 4mins standing 117bpm and after 5 mins standing 111bpm. but isnn't the heart rate suppoesd to continue going up if u have pots. the only thing i was doing differently for the last readings was standing with my arms down. maybe i'll try it again later when i have time. whatever the case, i'm still better than last week! yay! haven't thrown up yesterday or today! Altho i woke up getting nauseous AND with cramps..yep, that time of the month, too, and i was like, ok, i'm gonna take a fourth of the nausea pill - my dr. said that 1/4 will not make u so loopy and it takes the edge off the nausea. surprisingly, i think it helped my cramps...don't know why but oh well..happy times cause that pain was going to not help the nausea! so, i did not go to lecture this morning cause i woke up feeling weak and i need to take my psych test tomorrow ..or sometime later today...and tomorrow i have 3 classes all in a row, so i'm trying to rest up since i'm feeling pretty noodle-like...or like a silk scarf trying to stand up. when i was little we had this picture book about the body and there was one picture trying to show the importance of our bones...it showed what a ballerina would look like without bones - she was all wobbly and ripply and wavering....so, that's my code word to my parents when i'm not feeling well "ballerina with no bones" Hugs! I'm thinking about all of you! hope ur having a great day or at least tolerable! if not u can reply here or send me a personal message and i'll pray for u individually, too! love u waaaay more than lots, sun

Hi everyone, i'm sorry for the ten zillionth question. for those of u taking antidepressants for pots, which one can you tolerate the best. i was on 2.5mg of lexapro a day. my nausea started before that, but my dr. thinks that pushed me over the edge to vomiting. and she said that the cardiologist said that all drugs in that class work okay, but he was going to try to look into why they do. basically, my doctor told me to hold off on the lexapro until my stomach is better and then try it again and if my stomach gets messed up again then we know it's the lexapro. but, just in case it is the lexapro, i wanted to ask you all which antidepressants in that class of meds you can tolerate? because whatever side effects you get, most likely, i'll get them. it's not guaranteed, but you know what i mean. thanks for your help! hope u r doing as well as possible..and better! don't overdo it! praying for u all! hugs! love u lots, sun

Hi, i get badddddd nausea and i have whenever i've started going downhill since the beginning of my problems. i've had pretty bad nausea and vomiting this week...had to get an iv yesterday. and i think in the few days i've been on this forum, i've noticed posts about other people having nausea. But, i dunno. I was given an iv and then phergan...phenergan knocks you out, though, so that is a big downside...it makes you loopy. But it works pretty well. i only threw up once on it and i think that's when it ran out. but i dunno. nausea is soooooooooo miserable, tho. so i'm sorry u have this! i am praying for you! what i try to do is sit really still after i drink a little sip and then hope i'll hold it down. same goes for crackers (or whatever food stays down for you and is simple...some people say on here that crackers aggravate pots, tho) if u can get to that point, hopefully. my doctor today told me to eat a little at a time and drink a little at a time or else your stomach will stretch and then it'll send the food back up (if you're having a problem with vomiting). and also avoid acidic foods like tomato stuff, oj, etc. But, nausea is horrible, regardless of whether u vomit. so sorry you're so miserable! Feel better!!!!!!!!!!!! HUGS!!! love lots, sun!

i have that rollercoaster. because there are times when i feel better so then feeling yucky and having normal functions snatched away from u again is HARD! because when i am feeling pretty well, i don't think that i have or think about having a condition. and then i'm like, "will it ever go away?" when i get yucky. it's better than always feeling yucky but it is like teasing us. Sorry. it is really annoying tho. i'm praying for you, though. yeah, i ask myself and everyone asks me "what were you doing differently?" Most of the time, i have NO idea. i guess if i had the time to pick apart my life, i might find some trends, but...i want to spend time living and not feeling sooo sick. so, good luck. i wish i could make the rollercoasters stop, but I can't. But i know it is really upsetting when u have functions snatched away from you and u don't know what caused it and u try to ignore it but can't and that just makes matters worse because it's like trying to ignore having a few flu's at once.... HUGS! love, sun

Doctors confuse me too. Lots of the time they are CERTAIN of a diagnosis (even if u know it's not true in your gut), and much/most of the time, they don't know what to think or think you're crazy. i think it's because they don't like to admit that they don't know something so they're hoping u have something THEY know about and if u don't, then they treat you like you're crazy, instead of looking into other possibilities. About the doctor talking to you in an unprofessional manner - happened to me this weekend and many times the past 6 years. Not fun because even though you know they just are having issues, it makes you feel lost, frustrated, and like you'll never find an answer. when this happens to me, i start doubting that i have something wrong with me...but from my symptoms, i know that's not true. And i've had doctors overlook stuff. for the most part they've mostly been right that nothing has been majorly wrong with me, but they have overlooked other stuff. Maybe you said this, but who first diagnosed you? unless that person just had an ego and just diagnosed u without proof, which i find kind of unlikely, but, the ego part is more likely, you do need this issue addressed. i know it's frustrating because you feel like you are running out of trusting places to turn. but, just because a person has an md doesn't mean he/she is God. Some of them think they are (some are very nice though, so i'm not saying all. and i know even the ones who don't get along with us help other people, so they're still helpful...), but they aren't. i don't know anything about the lawyer thing. sorry. i can see where your lawyer is coming from, but ANYONE who's ever had a condition like this, knows that, we are, indeed seeking out a diagnosis - not for kicks, but so we can feel better or at least know what to do next. And i think that that is a right every person should have. but maybe if doctors across the world were better connected and informed each other, we wouldn't have to travel to find one who could help our problem. sorry that this confusion has left you upset. but, help is somewhere around the corner. just because this one doctor treated you horribly (and i'm sure many others have done this to you before) it is not the end. he/she is ONE doctor and there will be one out there who will know how or be willing to learn how to help you, and will want to. a rare breed for us pots people, but we're here for you. you are not a bad patient, he was being a bad doctor and obviously didn't want to help you more, which is what doctoring is not all about. it's not like we're drug addicts in search of meds. but i know that's how they treat us at times. sorry u had to deal with this. but we're here for you! any time! altho i don't understand completely because i'm not u and don't have all of the stuff going on that u have, i do understand how miserable arrogant/ doctors who lack compassion can make u feel - in addition to the pots. HUGGGGGSSSS! love u LOTS, sun

Malls make me like that, too! i feel like if i don't find somewhere to lie down, quickly, i'll pass out. i never have passed out, but malls and those lights...wow, i feel like i'm gonna pass out. maybe that's why i've never been much for shopping! well, hopefully you'll find a way to not have to be around those lights? wayyyy easier said than done, tho, but i'll be praying for you! hugs, sun

Hi all, hope you're having a pleasant day, doing whatever is right for you! I'm actually doing better. i spent a couple more hours at the health center this morning for my follow-up. i managed to keep some fluids and crackers down while i was there and i am feeling less nauseous today. They and i think i'm getting over the big vomiting spell. my doctor there told me to hold off on the lexapro for now until my stomach has completely resolved itself - and she gave me a prescription for zantac to take to help heal it/reduce the acid (but only to take when i already have some food in my stomach so i won't start vomiting again). My orthostatics were fine while i was there. i didn't get the exact numbers...but my orthostatics are usually fine in a doctors office, although, once i've been sitting down for longer and then they take them, then my pulse gets higher. But, whatevs. But i have been diagnosed with pots, but i don't get low blood pressure and i got a call from the neurology clinic and i'm supposed to go there in june...even tho i've been to a neurologist elsewhere before and i don't really want to go to more doctors..but maybe they'll be better than cardiology. i'm tempted to say "i don't need medicine for pots, i don't have pots." But my past holters have shown that my pulse is too high and yeah. but sometimes i question if i have anything because i've been told so many times by diff doctors that nothing's wrong. but these docs haven't said that i don't have pots just cause my orthostatics are usually not too alarming - but sometimes they are abnormal. But, i need to realize that i do still have this so that i won't make myself worse! Do any of you ever feel like this ? whatever the case, at least i'm doing a lot better than last week and this weekend. now, i need to catch up on psych so i can take the test so i can still be in the class! I'll try to do leg flexing wheni'm studying in bed...those help, right? thanks! i'm praying for all of us! love lots, sun but id on't have low bp so i wonder if i still belong here?

Hey guys, i live in northern california. i am actually doing better. the iv and the medicine helped. it helped my allergies, too, randomly, altho i don't really care about those! I am taking sips of seven up and am hoping to eat some crackers, however, i don't really want to because i don't want to start a puking attack on sunday night cause i might have to go to the hospital then and i don't want that. but, we'll see because i know my body must need food. oh well. whatever the case, i'm lying on my bed leaning on my big stuffed panda, again. :-) I actually cycle between feeling really horrible - like saying that i feel horrible is an understatement. I can barely get out of bed for like ...ever and i get really nauseous and out of breath, etc. and standing up or even taking a shower..that's a joke! But then, i've had times where i feel almost like people without pots. ANd i think i'm better and it all went away but then WHAM! It comes on back and hits me hard and i'm down trying to figure what knocked me off of my feet. have any of you had times when you've had to lie on the floor until you get enough energy to go somewhere in the house to lie down or to get onto a bed? So, basically, i've been cycling off and on with this for over six years. It is hard for me to get used to the idea that i actually have something and it won't just disappear and never come back. And i try to make myself think that if i start feeling slightly better then i am totally better and thinking anything else would be me being lazy. But, you guys are helping me come to grips with this. Right now i've hit a pots hole (thanks for the explanation about that in the othe post), but the iv and medicine helped me a little. ANY relief, i consider an extreme victory. hugs! thanks for all of your concern ps-right now i'm not back at the bike riding state yet...i'm working on taking a shower..but i took a bath when i was home this weekend...maybe if i take a really short luke warm shower? warm/hot showers make me feel sooooooooo like i'm going to faint and i take like forever and a half to recover. i am in intro to psych, btw. Yeah, that part about abnormal psych looks interesting. later! sleep well everyone! love u lots and praying for u all, sun

Thanks guys! You are all so helpful and just made me feel better emotionally! Well, i've learned to never trust doctors again! Why? because my older sister mad me contact the student health center here because she said it was someone's job to help me because i couldn't hold much of anything down and could barely move around. so i called and got an after hours appointment - i was dehydrated and they had to start an iv there so that i wouldn't have had to go to the hospital. then they gave me some medicine to take when i get home for the nausea because it knocks you out. i just took it with a sip of seven up and hope i can keep from puking so that it will start to work. they hope that it will work so that i can get in more liquids and not have to go to the hospital. so i'm sitting very still, trying to not puke, with my puke bucket next to me. and i have to go back to the health center tomorrow morning. another thing was they yes, my pulse was indeed high at the office and they said it was irregular, too. i've had extra beats before but my holter showed they aren't all in a row, they're isolated. but whatever the case, they were actually concerned/cared. but my sis says that even if they weren't, it doesn't matter because i know something's wrong with me so i just have to find people to help. Family is awesome. so, being not so dehydrated and having supportive people and especially all of you has put me in a better frame of mind. i'm not great, but i'm better than i was. so yay! a victory. and i think i am gonna request a copy of my records. i'm scared to see what's written -my cardiologist was like slapping me on the hand for asking for help and it turns out i'm dehydrated. he had sent in a slip for me to be referred to an internist at stanford, so at least he did that. but he was acting like until then, i was on my own, unless i couldn't keep water down and got really dizzy and then i'd have to go to the er. Um....aren't we always dizzy? so, i may seem negative about doctors but i've had bad experiences, so i just need to realize that like my sis says, their reactions are no reflections of me. Anyhow, my teachers are being really understanding and i'll probably take an incomplete in my psych class b/c someone explained to me how that all works..so iwon't have to drop it. and my other teacher was like "don't you dare come to class on tuesday!" and my other teacher was really sweet and understanding. so, yay! thanks so much to all of you. the muscle probs were actually always around and i had actually been exercising more over spring break, which i think is what caused this major setback/slide, but here at college, i also ride my bike to classes and walk around. but, with this past week, i haven't had the energy to take a shower or walk to the bathroom barely. But, i think the iv helped somewhat! yay! hugs to all of you...and yeah, i think i was starting to feel nauseous b4 the lexapro, but i get nauseous really easily. i think medications just make it worse - because that's what happened in 12th grade when i lost 40 pounds. ok, i'm stopping typing, but the iv actually helped my muscle pain so far, i think. im praying for all of you and your're so great! all of you! thanks sooooooo much! I'm smiling now! and i'm looking forward to get to know all of you better. cause we can endure this together! yay for community! love you lots, sun

Hi everyone, i hope you are all having a Sunday that isn't full of many if any symptoms. That's what i hope, at least. I don't know what to do. I have a cardiologist who put me on lexapro but i have to wait two weeks to see if it works - in the meantime, i'm so nauseous and don't feel like eating, i'm exhausted, and i can't do anything. the doctor doesn't think that the nausea and all of my symptoms (the muscle pain, extreme fatigue, etc) are caused by pots, so he said he feels like he's turning into my primary care doctor but he's not. And that me and my family's "daily emails" and pages make it an awkward situation and that he has no patient like me and that i keep it from being a therapeutic distance. He says i should see my primary care doctor about the nausea cause it's not in his field and my family and i are asking too much of him and have been and he told his supervising doctor this. But the problem is that my primary care doctor is at the student health center. i'm too tired to go there and know they'll just run tests for the nausea and say nothing is wrong and that it's all in my head or that i just have to deal. He admitted to my mom that it is a heart problem but he doesn't think it causes all these symptoms. Oh my gosh, i've been to soooo many doctors and nothing is wrong with me! Imean, i have pots, but apparently that's not everything, so everything except the fast heart rate must just be something imagined. he didn't say that, but what else am i supposed to think. i'm so frustrated that there are no doctors in california who know about this. everyone talks about doctors in ohio but i don't have the money to go there and these doctors here have such egos and i'm probably worked up a bad reputation in the whole stanford medical community and probably the bay area. and he claims that i have to be patient because they found something that no one for six years had found - yeah cause we handed it to him on a silver platter after talking to people with the CDC or NIH...i forget which one. and at the first appt he and his supervising doctor said i just needed to exercise more and thought i had some mental problem going on. i'm sooo frustrated. i don't even feel like i have enough energy to go to school. i'm at home for the weekend. but i don't want to be away from my friends and i'm embarrassed to email my teachers again and i don't know what to do. my family is here for me and God, and i do have good friends, but they, like me, can't understand why my doctors can't just be more on top of things. where should i go what should i do? i was just lying on the kitchen floor crying but not much cause i didn't have the energy to. and i had to take time to get up and get some water so i'm trying to gradually sip it to keep it down and maybe that will help. i don't know what to do. these doctors don't care and don't help and i feel so stupid because of everything he told me on the phone - that maybe my primary care doctor doesn't respond because i overwhelm her like i overwhelm him with info. my mom says this is bs because what are doctors for? but i'm starting to blame myself... ahhh. help! love u lots, sun

Thanks everyone. I appreciate your help It's comforting there are other people like me around. Right now at least my best friend is doing her art stuff in my room and we're listening to music while i'm lying in bed trying to do work on and off. Yes, I do go to Stanford. I'm a freshman here. I love it soooooo much. i just don't love being sick, but, oh well. We can be the lying in bed w/your laptop club Yeah, how many medicines have all of you tried. my cardiologist basically said they're gonna try lexapro and if it doesn't work then they'll assume something else is going on and i'll have to go to some other specialist. I don't get that. Apparently there are so many medicines people try. I'm almost tempted to email him a link to the website but i feel like that won't win me any brownie points. Hrrfffggghh. So, i'm just waiting. I don't get low blood pressure when i stand. my cardiologist said he thinks that there is some problem with my nervous system that calms things down. And the other cardiologist (one's a fellow, who's the nicest, and one's been a cardiologist for like 30 yrs) said something also about vascular tone or venous tone or something like that. I wish there were some medicine that would work soon or quickly... And i wish i could suggest more mediines to him. oh well. thanks for your support! and yay that the sun is shining! HUGS and prayers, sunisshining i love you all and hope to hear from more of you too. i've finally found people like me.

I think i'm in a similar place to you. At least my docs said that they know depression isn't causing my symptoms but that anyone would be bummed out if they felt so sick. But, i'm still worried to say much about how i'm getting upset now cause i fear that future doctors will think that's a cause. but, I will pray for you. I finally broke down and emailed my doctor to let him know how frustrated iw as but he probly won't email back...but maybe you should tell your doctor how frustrated you are with the whole thing and make it clear that you only got upset when you started feeling lousy. Ask them if they think depression causes lupus or other chronic probs. I mean, seriously. Maybe asking that wouldn't win brownie points but...it's true. Plus, we aren't even recognized for having this problem that much or for its severity which is even more upsetting. maybe if they changed their attitudes and approaches we would not get as frustrated and emotional. I have a suggestion..this doesn't help the physical stuff, but listen to jars of clay - the music group...their music is really comforting. I like all kinds of music so i don't know if u'll like them, but my friend has all these jars of clay songs and she knows i like them so she leaves her itunes up now so i can share her music :-) Feel better and i'm sorry you're getting blue. But i too get the crying spells. But it's natural. HUGS, sunisshining

I'm sorry you have to deal with this. It's so horrible and you wish the doctors could realize that even when they leave the office, you are still suffering, but they don't seem to care. I finally got one who told me that he knew i was frustrated, but he was too. But, i'm so sorry. IT's such a letdown to feel so horrible and then have to keep on waiting and have no one seem to care or just think you complain too much about insignificant stuff. I'm thinkin about u and praying for u. HUGS, sunisshining

Hi Everyone. I'm sorry that you're all so sick. I am praying for all of us and all of the doctors so that we can get some relief. So i just found this place. I'm in a hard position right now. I"m so exhausted and I'm a freshman in college. I managed to get good grades the first two quarters but i don't know what i'm going to do this quarter. I don't think i'm going to be able to take a normal amount of units because i've gotten to the point where even taking a shower is really difficult or just walking to brush my teeth. In addition, my muscles burn so badly and start to tingle. I've been diagnosed with POTS because of in-office tests and two holter tests. But my heart rate is too high most of the time. I've been given a small dosage 2.5mg of lexapro b/c the cardiologists here at stanford say that's what their colleague has had lots of success with in treating adolescent/young adult females with my problem. But they don't know what causes the burning in my muscles. I notice that my arms burn more when i get out of breath, which happens a lot. Writing or typing is even painful or if i get up to go to the bathroom and then get back in bed it takes a while for the tingling and burning to calm down to a semi-tolerable state. sometimes i get horrible pain from my belly button to my toes that lasts for about six hours and keeps me from falling asleep. And i just feel weak. It has gotten really bad this week so they put me on the medicine but i don't know what to do in the meantime. I"m also so nauseous right now. on thursday i threw up twice at the cardiologist's office. So i've been trying to maintain on crackers/plain bread and soda. plus apple sauce every now and again. My cardiologist said he could prescribe something for the nausea but then i emailed him and he said to email my general doctor at the student health center because he is just a heart specialist. i'm not going to email her,t ho, cause she barely ever emails me back and the only time she did was when i was telling her that i was having my cardiologist sending documentation to the Disability Resource place, and she emailed me back and said that sounded like a good idea. So i'm just so frustrate. I have been on and off sick since middle school after i got a cold/flu and what they thought was a sinus infection. I've been through so many doctors - pediatricians and pediatric specialists - neurologist, cardiologist, endocrinologist, nephrologist, GI doctor, psychiatrist, psychologist, ER visits, allergist, rheumatologist and the list goes on and on. I've been on so many meds in my life - for what they first thought were migraines - topamax, elavil, effexor, periactin, magnesium, b6, chlorproma-something, pain meds, some other antiseizure meds in iv to try to stop headaches, prednisone - that was the only thing that worked but then after a few months it stopped working. Then iron because i am anemic cause i wasn't eating enough iron but my counts are back to normal again but i still feel lousy . At least with this latest relapse i'm not haviing the horrible headaches (i would get so irritated by the tiniest sound, smell or light - my poor parents and sister!). But i just feel horrible. I have been meaning to post to this board for a few days but didn't even have the energy. i'm lying on my bed right now with my laptop leaning on my big stuffed panda in my dorm room. Most of my friends are going into SF today. So lucky! I want to have enrgy to have fun again...or just do normal stuff would be a good first step. So, i'm just kind of waiting, hoping and praying. I don't like being the sick one. I like making pwople feel better - i'm the "sunshine committee" in my dorm - i enjoy making cards and tea and loaning out stuffed animals to people who are sick...i don't like being the sick one and i don't like not being able to say "yeah, i'm feeling better." So, i emailed my cardiologist again asking if he could give me a higher dose of the lexapro to see if it will work faster or better. I figure it can't hurt because I'm starting to get pretty blue about feeling so icky. But the only problem is that i won't feel all happy until i feel better because that's alli want. that's all i've wanted since middle school. Senior year in hs i lost like 40 pounds before i was put in children's hospital. And i think i've started losing weight again..but only like five pounds in like a few weeks. But I really hope i don't start losing cause i lose really quickly and then i get weaker. I'm hoping that this med will work and all i ahve is POTS. The doctors say they don't think all of my stuff is caused by POTS and that it's probably something that is going to take a long time to play out, but there's a slight possibility it could be all pots. So, i have to go to a stanford neurologist and and internist at stanford since they say that'll be better than having a student health center dr. managing my case and i thinkt hey want me to go back to rheumatology or something like that...even though the doctors there looked at me like i was crazy. Like most doctors. i "ve only had a few who eventually trust me/understand, but they're at a loss cause they can't really do anything. that's like my cardiologist now. I WANT TO FEEL BETTER!!!!! I can barely stand up for long without feeling like i'm going to pass out - i never do i just feel ike i'm gonna faint. And i just feel weak like ineed to lie down. I've tried eating really healthy food and i've even tried exercising but it hasn't worked and now i'm to the point that i can barely walk to the bathroom without feeling out of breath. How can they let us suffer like this and not find a cure or recognize it as something serious? at least my cardiologists know that it is like my heart is running a marathon all day so that would be tiring and they say to rest, which i'm doing cause that's about all i can do, but i like doing stuff and being all social and doing work and i like to live a life full of energy...bouncing off of the walls. But i can't right now. I'm glad i found this place because for the longest time i thought i was the only one who felt like this and convinced myself i was crazy even tho when i try to ignore how i'm feeling i get so weak and almost pass out. This has been on and off for like most of my teen years..and i'm 18 now. I love u all and i'm praying for us. Thanks for being here. Let me know if u have any prayer requests. ~sunisshining