Sunfish

SSRI = Selective Seretonin Reuptake Inhibitor good luck with the new med. it is true that many meds have accompanying side-effects that pass after a few days. hope you get some relief... :-)melissa

p- i agree that if these symptoms are entirely new for you it's a good idea to run them by your doc "just in case" but like others can relate to just about all that you're describing....if not currently at some time over the years....i actually cannot tolerate tilting my bed at all without losing all feeling in my feet/lower legs. i have never awakened to pass out, but in the midst of a bad spell have gone "in" & "out" while laying. my take (agreed to by docs) is that my body was still sort of "recovering" for the upright stress. i have passed out from sitting but only if i'm already not feeling well. i think it's significant that you're fighting a bug/virus of some sort, however minor. this can really wreck havoc on your system, often focusing on the "weakest link", i.e the autonomic system. so...don't worry too much but give the doc a ring... i hope you're back to your feeling great self soon & while i'm sorry you're having a tough time i'm glad that it didn't happen in the middle of your graduation festivities. let us know how you're doing... :-)melissa

while LTD is definitely different than SSDI, i do think your receiving approval for SSDI has merit in terms of deciding whether or not to go forth. there are so many other factors to consider though. i'm guessing you'd be getting a lot more money from LTD but am also wondering what they have told you & how much of a process you have gone through with them. are there further steps to pursue short of taking them to court? were you on LTD & they stopped it or did they never approve it in the first place? sorry for all of the questions but i am particularly interested - both for you & for me as i'm currently receiving LTD & have been approved through the end of august. two other things...do you know what actual medical info your LTD folks have received frm docs? this could help you with your decision in terms of how "complete" of a picture they have. do you have an actual copy of your LTD plan? having worked in the insurance industry, i can affirm that it's REALLY good to have the actual policy, despite the fact that you may have to work a bit to get it & that it will be long & tedeous to sort through. most likely you'll have to pursue obtaining it through your former employer. good luck & let me know if you have any questions. i've been doing a lot of reading & research on all of the LTD "stuff" so i'd be happy to point you in the right direction if able... :-)melissa

just b/c it hasn't been mentioned specifically in this thread, some folks with various dysautonomias have had success with SSRIs for symptoms other than depression/anxiety too. i have been on them at times (celexa or lexapro) & believe that they have been of help, but find it hard to "track" over time b/c of the fact that they take a long time to get both in & out of your system. at different times i have been on them for different reasons (at one point mood/depression while recovering from eating disorder& at other points as a combo of dysautonomia meds.) good luck with whatever you decide! :-)melissa

hi ariella - sorry you had a rough doctor's visit. whether it was a misunderstanding or otherwise, it's never fun to come away not feeling good about an appointment. i agree with what a lot of others have written....it seems that there's a balance of some sort between 1: not needing to make a bigger deal of something than necessary until it becomes necessary, whether that is sooner or later or never and 2: being aware & advocating for good diagnosis & care if/when it does become necessary. the fact that you have the knowledge basis already is a huge step in the right direction if/when its needed. trust your feelings & instincts in terms of how far to pursue things with your daughter right now. good luck & let us know how things go... :-)melissa

you've already been given lots of good feedback & info in terms of the "why" behind the high salt, but i just wanted to throw one other thing in...i admire your efforts but i don't know anyone who could tolerate actually drinking salt water...i think it would make me gag immediately. IF you get the okay from a doctor for high salt living (and...as you referred to in terms of the low-salt mentality of most of the world...lots of funny looks from folks while you pile on the salt) there are a lot of options in terms of how to get it into your diet. i had a really tough time with salt pills (my stomach didn't like them) years ago & i've since simply acquired a taste for high-salt foods. i know some add salt in gatorade & say it's not noticable; i haven't tried. but there are lots of high-salt foods out there; and a salt shaker can make anything nice & salty. like others have mentioned, definitely run the dietary change by a doctor first. unless you have high BP it's pretty safe but you should still check. i do find it interesting that it wasn't mentioned to you at all...it's usually a stand by with a new diagnosis... good luck! :-)melissa

lisa - just wanted to let you know that you may be fighting an uphill battle with trying to get the blood volume test....not that it can't be done, but it requires being in a lab that is set up for such & there just aren't many of them. there's no plain blood test that is a test for it b/c while different components of the blood mean different things, some of which can be related to volume, they can mean a host of other things as well. i recently had the blood volume testing done at vanderbilt by something called the "daxor method"; it consisted of my having to be motionless (laying down) for a period of time while i was injected with a very small concentration of a radioactive substance that would distribute itself evenly in my blood. they took blood before & after the injection and in this way are able to measure the volume (based upon the concentration of the radioactive substance after it has had time to evenly distribute). a doctor actually had to administer the test. good luck! :-)melissa

hello & welcome! unfortunately it's more the norm than not to go through years of misdiagnosis, no diagnosis, etc in the land of dysautonomia. and of course all of the accompanying frustrations. our age profile sounds similar as i'm 25 & have had "obvious" symptoms since i was around 16 or so...some hints earlier but only in retrospect. i have OI/POTS & NCS plus some added bonuses added in the past few months that don't fit too well in a category. there are a lot of good resources on the site, & lots of great people. check out all of the links in at the top of the forum postings as well as from the main page...they can keep you busy for ages, nevermind reading posts - present & past. there's a search feature too that can be helpful if you're wondering about something in particular. the things you mentioned that you've been directed to do are some of the most "popular" and do a lot of good for a lot of us, in part or in whole, alone or with other stuff too. and patience & perserverance are musts:-) good luck & hang in there. getting a diagnosis isn't a magic fix but it's definitely a step in the right direction! :-)melissa

much of what there is to say has already been said, but i'll just re-emphasize the fact that it truly is a fine line...up to that line exercise & pushing it will help, over the line may hurt...not in a permanent drastic way but in a way that can be a set back & a source of much frustration. in the past dr. grubb has said to me that he has to push most patients to push themselves; for me he has had to make sure i don't overdo it. that's my old competitive spirit, varsity sport nature of no pain, no gain. there can definitely be benefits to pushing, but at least for me i've had to redefine what pushing means; it not what it used to be for me. that said, when i was first diagnosed with NCS years ago i was a varsity athlete, did a triathlon less than a week after my first TTT, was on an army scholarship, etc...i didn't have any heat issues in those days & was fine generally as long as i was moving (and not standing). i'm in a different spot now but some with autonomic issues can exercise with hardly any problem; we're just all so different. and that fine line i was mentioning...it can change on a daily (or even more frequent) basis, which can add another challenge. for me i can set vague goals but cannot set something as rigid as a certain time or distance a certain number of times per week b/c it's simply setting myself up for discouragement right now; this is different for different people i'm sure but for me i'll push too hard if i'm "scheduled" for something. in the past i've had success with swimming...just a little bit, and having to lay down afterward right away (i always warn the lifeguard ahead of time so as not to cause a stir). i haven't been able to try this lately as i don't have access to an indoor pool & it's too hot outside. i've also been able to lift some - while seated. and to use a recumbant bike. currently i just started a cardio rehab program & am trying my best to not get frustrated. the first day i couldn't go more than 5 minutes with no resistance on the rec. bike. it was weird b/c my issues previously were that my HR would go up & up uncontrollably. now i'm on a beta blocker but i got really dizzy b/c my BP was dropping (they measured). i'm working up though & have been going about 3 times a week for 2 weeks with already some improvement. i've been doing some (seated) lifting too which has been okay with rests (laying down) inbetween. please be careful though with the heat. it's awesome that you're getting out there & pushing it but realize that it's okay to have a day where you don't as well. that can be the wiser thing sometimes, as hard as it is to block off that old athlete mentality. it sounds like you're already adjusting as needed though which is good. i've also done well with pilates at times, adjusting the standing exercises & enjoying the fact that much of pilates is laying/seated to begin with! for me, and probably for all of us in our own ways, it's all about that ever-changing (& often mysterious) fine line.... :-)melissa

i'm not taking one currently but have been on lexapro & celexa (only one at a time) in the past. i actually just stopped the lexapro when i went to vanderbilt & may & didn't restart it (under the direction of my doc upon our new mix of meds to try). when i stopped i was on 20mg of lexapro nightly. i had a REALLY tough time stopping it (along with the rest of my meds) but it was seemingly not just being off them but getting off them...a withdrawal of sorts. i think the SSRIs helped me at one point in terms of symptoms but somewhere along the way lost effect for me...when i first started them i had a bit of nausea but not bad & not for long... good luck! :-)melissa

You both continue to be in my thoughts & prayers. I hope that you are able to get some good rest tonight & that tomorrow goes as well as it possibly can. It's also good to hear the the puzzles are giving you all a smile; I do think it's great that you're going ahead with them, especially since you'll still be able to decide how much time to put into the project at any given time...much different than a job commitment wherein you're having to answer to someone else. Keep on hanging in there the best you can.... ~melissa

Hi Megan- Glad to see you back on the board! First, don't give my memory too much credit...I kept notes while I was there & used my discharge paperwork too:-) I'm doing better than before I went, although actually the UC is the least of my problems & has been for awhile now...I have a pretty mild case of it so it was scary at first but is pretty under control. The rest of my body on the other hand... Second, you said you just got in at Vanderbilt? For research or for the outpatient clinic? Did you talk to Bonnie on the phone? Do you know when you're going to be going? Sorry for all of the questions...I'm just curious?! If you'd rather send me a PM or an email instead of posting that's cool too...I just remember how excited I was when I got in! :-)melissa

oops..i just realized that i never replied to the last few messages...sorry! steph - thanks for reading...i'm glad you felt it was worth the read:-) i'm glad it was helpful to others but i think the writing it out was helpful to me as well. and i've since sent it to my parents who have asked me if it's ok for them to pass it on to a few close friends/family...so it was worth the write (and the accompanying sore wrists!) and yes, it certainly is simultaneously funny & horrible what all we put up with from the medical world... roselover - that's funny b/c you sound similar to me...the HR up 30 beats as a guarantee & the BP drop as an added bonus at times. at least that's my most consistant profile; it loves to change on a regular basis in every direction imaginable. it was the 30 beat increase that qualified me for the one study in a super-quick fashion; i qualified sitting, much less standing....and to think i was worried about getting sent home! that's interesting that you were in a study for mestinon for fibro...i hadn't heard of that usage...i think i wrote in the mestinon thread but it was NOT good for me on it's own...only in combo...but obviously we're all different...if you're not doing well now & have a doc's support/back-up i'd say go for it. the good thing is that it's pretty short-acting so even if it's not helpful or even doesn't do well for you it should be out of your system relatively quickly. have fun gathering your records & let me know if/when you hear anything. i don't know if they "slow down" at all over summer months or not.... :-)melissa

alicia - i'm hoping you can find a doc to help advocate for a scooter...perhaps if you explain it's not for all of the time but just for campus, etc. the folks at vanderbilt actually wanted me to get a scooter & i was pushing otherwise but for me i need to be able to transport it more readily. i too have the goal of trying to get back to school in the fall but my program will be all in one building so that would make it A LOT easier. hang in there & keep advocating for yourself. i know how tough it is to be "hit" with this mid-college...i was almost exactly your age when things were first bad for me, had a big-time "relapse" at 21 and another this past year (at 24...25 now). i've had lots of ups & downs (literally & figuratively) over the years including times off of school & a year that was grand. good luck with your new doctor. :-)melissa

hi mindy - you don't know me as i just started posting on board in april, but i'm definitely not new to the POTS/NCS/dysautonomia world, & have had cervical spine problems too (i have a fusion now). i just wanted to say "welcome back" and give you a virtual hug. i don't know how i managed without the others that "get it" on the board before i joined...and i held out a long time! i too am going through the SSDI process, somewhat against my will...my LTD company is "making me" even though i'm still holding out hope that i'll be better sooner than is probably practicable. i know that i spent over 12 hours on the online application & didn't even feel that i was putting my all into it. and then i still had to go the office with my birth certificate & to sign releases (there was no way i was mailing them my original birth certificate & trusting them to mail it back!...and my printer was on the fritz so 29 copies of releases were not happenning). it's definitely hard to be applying when i feel i'm too young to be doing so (i'm 25) & not wanting to be needing it. so...i'm glad you're back & look forward to getting to know you. hang in there & look around the recent posts...there have actually been quite a few on LTD & SSDI issues over the past month or so. :-)melissa

danelle et al - i answered "whenever i go out" in the poll but honestly there wasn't really an answer that fit for me exactly. perhaps i should have answered "only in stores" but it's probably somewhere inbetween for me. it totally depends on where i'm going, how i'm doing, etc. right now i'm limited to using one where there is one provided, which means i simply don't go a lot of places b/c i can't. but i was actually fitted for my own last week so once it goes through all the insurance bureaucracy i'll have more flexibility in terms of where/when to use it. i never used one outside of a hospital or an airport until going to vandy this year & my reason would have been - for many years - the last one...the one about pride & whatnot. now that i've "bit the bullet" it's really been refreshing. still hard. and will be harder at times depending on the setting. but when i was at vandy i had a revelation of sorts & realized how it might allow me to do things i haven't been able to do in ages...go to the mall, a museum, etc...and how silly it is for me to not do so just b/c of my pride, ego, etc. i also came to realize that it actually looks a lot less weird to be in a wheelchair than to be crouching or laying on the ground, which i have done on a consistant basis for years now. a few other thoughts...the few times i've been out & used a chair i haven't been terrified of running into people or fearful of if there will be a line. i can't recall the last time this hasn't been the case. for instance i'd dread running into a friend, especially someone i don't know as well, as i'd end up standing there having to try to shorten the conversation before i passed out, trying to keep from passing out, having to explain myself if i sat or squated all of a sudden, etc...i can't stand it b/c by nature i love talking to people, running into people i haven't seen in a while, etc...but the standing thing always made it such an ordeal. i since ran into two people at the mall and while at first i had a rush of "wheelchair embarassment", it actually ended up being totally cool....it was in fact much better than the whole trying to stand up mess & really made my health stuff LESS of an issue rather than more. same with lines...i can't tell you the number of times i've left a store b/c i simply couldn't wait. or felt like such a brat b/c of being so mad that i was having to wait while squatting, sitting, & praying i'd be okay long enough to get to the front. when i'm in a wheelchair it doesn't matter so much at all. granted this isn't the case if i'm having lots of trouble sitting too, but i've only done wheelchairs at the store on "good days" at this point...on bad days i'm stuck at home. so...i know for myself i've crossed a huge bridge or moat or something in terms of using the wheelchair. it's still a hard realization to make. and it was hard to get fitted for my own. but it's also liberating. especially as it may allow me to do things i haven't done in years. and already having to have had spine surgery due to a black out & fall down steps i'm aware that my body that has put up very well with many falls cannot do so always & forever. it reminds me - on a larger scale - of the process i had to go through personally when i first got my disabled parking placard a few years ago. and when i first used a wheelchair at the airport. this is the "next step" for me. right now i'm pretty okay with it when i'm alone but haven't really used one yet with friends or family "out and about" (other than around vandy with my mom & at the airport). that's going to be another step for me that i'm still pretty anxious about but just about ready to embark on. i also talked to two wheelchair users - one full-time, one part - before my fitting so i was more informed about the options, as well as researching online & reading a book entitled Choosing A Wheelchair that i'd heard good things about & snagged a used copy of online for around $5. all of this was definitely helpful... i should be getting my sporty "quickie 2HP - in blue opal" within the month...i'm sure i'll check in with you all then... :-)melissa p.s. the vandy folk were sort of into my getting a scooter/ power-chair at first, but i wouldn't go for it b/c i wouldn't be able to transport it myself, which is really important to me. other options such as reclining back, etc that would be helpful at times weren't worth the cost/benefit analysis of how much weight they would add (almost would have doubled the weight) when i'm doing better i can use the manual myself, & the ultra-lightweight that i'm getting should make that even easier...it's only 22lbs!

don't worry too much about not "fitting" the typical questionnaire...i didn't fit the urology questionnaires locally or at vanderbilt but they've still been able to help me out...not necessarily with all the answers or a quick fix, but still help. hopefully you'll have a similar experience... :-)melissa

janine - sorry you had such a rotten walmart outting but glad that you were able to avoid hanging out in the ER for the day (as long as - i hope - that was an okay decision to make?!) do you have someone with you for the rest of the day or at least checking in with you to make sure you're okay (relatively speaking...i know you've already been having a tough time)? i know that after a total black-out i am almost always really "crashed" for the day, although hopefully the fluids will help that some for you....go you for turning up the IV! walmart is one of the places i've "gotten over myself" enough & now use a wheelchair...once i bit the bullet & did it the first time it has made the outing much less stressful. in fact it's switched my allegiance from target to walmart b/c our new walmart has really nice wheelchairs with baskets (as well as scooters) & target only has the big scooters that i'm sort of scared of using. but i too often think i'll be fine if i'm running in to the store for one or two things. i hope you're doing okay now. i'm trying to figure out the best strategy myself right now for getting toilet paper & cat food in this atrocious heat. hang in there, :-)melissa

i've been thinking of you both too...let us know how things are going when you're able but know that there are lots of us thinking of & praying for you both constantly. keep on hangin in there... love, melissa

deeplyset - i just wanted to welcome you to the board (although i'm sorry you find yourself having to be here!) i'm 25 & also have a large assortment of symptoms that often are quite frustrating, confusing, etc...a lot on the board do. none of us have the exact same constellation of symptoms but i can say that i've heard every one of the symptoms you're describing mentioned by at least one other person on the board. i realize that this doesn't offer a solution, but i know for me just knowing that others "get it" can be helpful. in terms of progress being slow, it usually is...honestly if you're making some progress, at frustrating as the speed (or lack there of) can be, it's still a really good thing. the toughest thing about POTS/NCS/dysautonomias is often their extreme unpredictibility & the ups&downs that come along with them. (since my diagnosis i have been everywhere from playing varsity sports to practically bedridden & everywhere inbetween. ) your comment about the blind leading the blind is very true...in reading the board you'll find that most if not all of us have dealt with a lot of uninformed docs over the years; the med folks often comment to me these days about well informed i am but largely i feel i need to be to keep myself safe!! so...hang in there & browse around the board...both links from the homepage & postings...there is a lot of good info & lots of great people. :-)melissa

linda - i haven't had a specific pituitary-protocal MRI, but have had several bloodtests done that were specific to various pituitary abnormalities, tumors, etc....these sorts of things can mirror a lot of POTS problems & are often very treatable. i have an article on some of this but it isn't online; if anything further occurs in this realm for you let me know and i'll get it to you. so...they're probably just covering the basis...one of those "probably won't show anything but let's check just in case" tests. let us know how it goes... :-)melissa

Hi Amy - I agree that it's something to get checked out...not emergent but worth bringing up with a doc. From personal experience though, they may not even be true petechiae. I had what multiple docs were certain were petechiae a few months ago...looked like textbook...and upon biopsy they ended up being really tiny hive-type rashes, so you never know. I'd been having various weird rashes since the fall with the longest break being over the past two weeks, perhaps as I've been newly taking cortef (hydrocortisone)...not with rash eleviation as the objective but I'm still quite happy. FYI, when the spots were really tiny they didn't itch.... Let us know how things turn out... :-)melissa

ariella - unfortunately i don't have much to offer other than a "me too" but wanted to let you know that you are not alone in the chills department. i actually had problems with chills before having problems with heat. now i have both, which is what makes this season so tough..too hot outside, & too cold inside unless i'm the one controlling the air. i haven't found any magic solutions other than bundling up though. although, when my stomach can tolerate it, a hot/warm beverage can take the edge off. and i have both mittens & slippers that can be warmed in the microwave which help at times. :-)melissa

ernie - glad to hear that you seemed to have a decent discourse with the ER doc you spoke with on the phone. hopefully it will help straighten things out (even though it shouldn't have been an issue in the first place!) :-)melissa

the pictures are grand! you look beautiful, as do all of the surroundings. such a nice p.s. to having read your story already...you described things so well though that i almost felt as if i'd already seen the pictures!! :-)melissa