Sunfish

while i would be the first one to tell you that it would be best to have a doc other than dr. grubb who is able to work with you on a more ongoing basis, i'm inohio myself and do want to clarify that - if you are in fact in or around the dayton area - dr. grubb would NOT be a four hour one-way trip for you. he is by no means just down the street & i know any measure of travel can be tough, not to mention the no-insurance-coverage issue, but for the sake of everyone reading i just didn't want any confusion re: location/ geography. not knowing exactly where you are in/ around dayton i obviously can't say down to the minute, but from dayton to dr. grubb's office in toledo the drive somewhere between 2 & 2.5 hours one way (so actually closer to 4 or 4.5 hrs roundtrip rather than one-way). while i do have a number of doctors i would recommend in ohio, unfortunately they are all in or around the toledo or cleveland vicinities. that said, if you've already found yourself hitting a lot of brick walls in the medical community - an experience that's not at all uncommon in the effort toward proper diagnosis & treatment (amongst other things) - it very well might be VERY worth your while to plan a trip to one of the specialists in ohio. i would not recommend planning/ making such a trip instead of finding a physician who is more accessible to/ for you (both in terms of physical location & ongoing availability for day-to-day issues), but rather as a sort of step/ aid in the process. right or wrong, many people have discovered that having a documented diagnosis - official paperwork of sorts - from one of the "top docs" (or institutions/ hospitals), so to speak, and being that you are in ohio you are actually closer to several of the physicians/ facilities. yes i know they are all still at least a couple of hours from where you are and i know that it's not the easiest thing to plan or make a trip, but people literally travel from all over the country and beyond. so - since you aren't THAT far from several of these "top" docs/ facilities - it really might help you moving forward to pursue at least one evaluation at/ visit to one of these locales; in doing so (and in then - hopefully - getting your "official papers" re diagnosis, etc.) you might realize the added benefit of other doctors (i.e. those in your area) taking you, your diagnosis & treatment needs, & your overall situation a bit more seriously. the ohio "hot spots" so to speak (in the realm of dysautonomia evaluation/ diagnosis/ treatment, that is) - are dr. grubb (at university of toledo medical center in toledo, ohio), several different doctors at cleveland clinic (in cleveland, ohio), & several doctors at case western reserve's university hospital (also in cleveland). searches here on the forum will provide more discussion/ opinions than you'd know what to deal w/ (for all three options) and each place &/or physician has it's strengths & weaknesses; if you do decide to proceed in that direction i would be happy to flush out the different options. in the meantime, i certainly wouldn't forsake or even put on hold your quest for a good local doc as - despite all the specialists in the world - there is truly nothing more valuable than having a good working relationship with a an accessible primary care doc. i know it can be easier said than done, but hang in there and by all means do NOT give up! hope this helps, melissa (currently of nw ohio but born in southern ohio w/ several other stops - ohio & elsewhere - in between)

firewatcher et al - i'm fairly sure that this study is entirely separate from any of the the info doctorguest was collecting. melissa

first & foremost (((hugs))). for the most part i ditto everything julie (mack's mom) wrote. it really does sound very much like Gi dysmotility of some variety.....not always easy to tell just based on symptoms whether stomach, small intestines, or large intestines...or some combination. as already said, the only gallbladder test likely to show anything would be a HIDA scan (vs regular ultrasound); the HIDA is essentially a test of dysmotility of the gallbladder (whereas ultrasounds show stones, etc, though with very severe longstanding dysmotility an ultrasound can sometimes show atrophy due to it essentially being "dead".) based on what you've described, however - in my non-medical (but ridiculously-well-traveled-in-the-GI-motility-world) opinion - the symptoms you describe don't sound as much like gallbladder trouble of any sort (motility-related or otherwise) but more so elsewhere along the GI tract; i obviously can't say for certain but if i had to make a guess i'd perhaps say stomach, aka gastroparesis. for better or for worse, your hope/ guess/ thoughts re: it being stress related - as some others have mentioned - may not be entirely off base. while you're correct that it's unlikely that all you're dealing with GI-wise is ENTIRELY nerve/ stress-related, the timing of things (aka your GI troubles flaring up to such a degree so soon after all the added stressors you've been juggling) makes it possible - perhaps even likely - that there may be at least some relationship. not so much that it's solely a stress issue but that perhaps all the added stressors as of late - emotionally/ mentally &/or physically (i.e. not sleeping/ resting &/or eating as well as your norm) - acted as a sort of trigger for some not-yet-diagnosed GI issue that - when day-to-day things are at their "best" for you - may be very minimal, aka so mild that you hardly notice it (i.e. that it "normally" manifests as fairly mild things that you've learned to adapt to, perhaps without even thinking about or realizing it on a conscious level; some examples might be your getting full a tad bit sooner than the general population, your preferring - and feeling better - if you stay away from huge meals &/or certain foods, your having a slight spell of nausea every so often, etc.....and any/all of these things - and/or others - might be the sort of thing that only happen occasionally, aka they don't have to be "all the time"). anyway.....re: stress - of any variety - being a potential trigger of sorts for an exacerbation of symptoms, it's really a pretty common thing. different people are different & some seem to have symptoms that are more or less sensitive to stress - so to speak - than others; similarly some people notice that different types of stress affect them - and their physical symptoms - differently. i would say the exact same holds true for folks with dysautonomia - and for many (if not most) chronic/ long-term health issues - to the degree that observant people - over time - will generally come to realize that their physical symptoms are (or aren't) related to various types of stressors to varying degrees. in case i'm not making total sense, i'll offer a few examples; they're applicable for any type of dysautonomia is general, many GI issues...just about any chronic/ long-term health issue for that matter. as i'm sure you've noticed on the forum over time, some - perhaps many - people tend to have more trouble with their symptoms when they're stressed in some way. what you may not have noticed, however, is that different people tend to be more (or less) affected by different types of stressors. i, for instance, have not once - in my more than a dozen years of dysautonomia diagnosis (& before), including but not limited to my issues of severe orthostatic intolerance, disabling fatigue, & extreme GI dysmotility (just short of total GI failure) - have i EVER noticed even the slightest relationship between emotional/ mental/ spiritual stressors and my physical symptoms; no matter the degree of this type of "stress" in my life - and trust me, there have been times that it's been extreme! - i'm one of the "lucky" ones (relatively speaking ) whose physical symptoms don't seem to get aggravated by stressors of the emotional/ mental variety. as you have likely heard/ read here on the forum (and/or elsewhere), this is very much not the case for some others as it is not at all uncommon for some people's physical symptoms to be "triggered"/ exacerbated by acute &/or ongoing elevations of emotional/ mental stress in their lives; this holds true for some with gastroparesis &/or other GI issues as well, for other health issues, etc. as we all know - whether they are generally defined as "stressors" or not - there are certainly other types of stressors as well that may also affect all of us to differing degrees. the other primary type of stressor, for instance, can be defined as a physical stressor; common - and universally applicable - physical stressors include lack of sleep/ rest, less-than-ideal nutrition &/or hydration, infection/ injury & exposure to extreme environmental temperatures and of course many with dysautonomia could add "being horizontal" to the list. and while it is true that such physical stressors will affect everyone - including the most healthy among us - at some point, just as some individuals find their physical symptoms to be triggered/ exacerbated by mental/ emotional stressors to a greater degree, others - myself included - find the same to be true when it comes to physical stressors. all of these superfluous ramblings to say the following: whether you're one whose physical symptoms tend to be particularly triggered/ exacerbated by mental/ emotional stressors, by physical stressors, or by both, the notion that whatever "new"/ extra is going on with you GI-wise is in some way related to all you've been dealing with is not ALL far-fetched. your last several weeks have undoubtedly been full of both mental/ emotional stressors (goes without saying, no? child very ill & in the hospital & thus dealing with all hospitals involve to name only a slice...) AND physical stressors (the hospital stay/ visits as well as your continued role as full-time nurse - PICC/ IVs & else wise - now that you're home, all of which i'd hazard to guess have had & are continuing to have at least some less-than-ideal effect of your sleep/ rest, eating habits/ nutrition, etc. any one of these stressors - mental/ emotional OR physical - would very truthfully be reason enough - for susceptible individuals - to have some measure of flare-up in their underlying symptoms - GI or otherwise - so while this may be your first or perhaps most troublesome/ severe flare-up/ exacerbation to date, you have had more than sufficient "reason" to provide an answer (or rather MANY of them!) to the oft-asked "what cause things to get worse all of a sudden?" all of that said i realize that it unfortunately doesn't give you a solution. the good thing is that your recent/ current level of stress on every level is unlikely to continue at the same threshold; as such it would not surprise me if your GI troubles settle down significantly on their own. that said, sometimes flare-ups don't subside as much as desired even when the initiating/ triggering stressor fades.....a case of something getting "jump started" so to speak but then carrying out the tried & true physics principle of "a thing in motion will remain in motion...." does this mean that you're doomed to contend with your current degree of GI discomfort? NO. (aka very VERY unlikely). what it DOES mean, however - or perhaps more accurately, what it might mean, is that some intervention will be needed to quell/ calm whatever your current state of unrest is GI-wise; this could include dietary &/or other lifestyle modification(s), medication, &/or some combination of things, and very well may be only a temporary measure - at least in part - to help return you to baseline rather than a permanent change &/or it may become something you end up having to employ periodically. so...while it is of course possible that things could return to normal for you GI-wise without any measure of testing/ investigation &/or treatment/ intervention, to a degree that's reasonable i think you would be wise to make some efforts to pin down what it is that's behind what's going on (i.e. unless i'm missing a significant amount of additional information i certainly wouldn't vote for anything invasive at this point, aka if a doc pulls a scalpel on you, definitely run!) as you well know not all doctors are created equal; the same holds true for GI docs and if anything - not unlike the (quite related) world of dysautonomia - some (perhaps many) GI doctors are NOT well-versed in motility issues and to varying degrees can even be fraught with misinformation & at times dismissive attitudes to problems which are very real and - in proper hands - diagnosable and manageable (though, unfortunately, not often curable; sound familiar?) treatments/ interventions vary in their success but for many can be very helpful so do NOT let yourself become unduly concerned if online investigation leads you to some more extreme cases (such as myself ) b/c - as w/ my overall autonomic failure/ dysautonomia - i am very much the exception rather than the rule. it's long past when i should have wrapped things up so i will do just that but don't hesitate to touch base w/ me re: any/ all questions you might have moving forward, particularly in the GI dept. in addition to my own experiences over the years i am in fact particularly up-to-date in the world of GI motility issues as i was blessed with the opportunity to attend (portions of) a week-long professional GI conference - the largest in the world - early this summer as a representative of a GI motility-focused NPO (Gastroparesis Association for Cures & Treatments, or G-PACT) with which i am involved (which - in addition to our intended outreach/ education of the many GI docs, etc. who are not up-to-speed re: motility disorders - also included amazing opportunities to network & engage in a good number of one-on-one &/or small group conversations with almost all of the top motility specialists from across the country!) but anyhoo....through not only the conference but also my work w/ that organization in general i have lots (or little...your choice!) of info - online &/or in "hard copy" - that i would be happy to send you if you do find yourself in the world of some variety of GI dysmotility (&/or for anyone else who is reading). okay....FINALLY shutting up now. hopefully there's at least something of some use in the above tome! hang in there the best you can & don't hesitate to be in touch if i might be able to help in any way, melissa

hi erika- generally speaking the quickest way to be seen/ evaluated at vandy is to apply as a research patient; this option isn't for everyone, nor does everyone "fit" what they're looking for for current research protocols, but the application - as well as a lot of additional info on the center - can be found via the following main link: Vanderbilt Autonomic Dysfunction Center additionally one of the links on the left-hand side of the page will take you to a list of the current faculty at the center. while i'm not certain that another clinician hasn't been added in recent years, the three longstanding vandy researchers/ physicians include Drs. Biagioni, Raj, & Robertson.....all of whom are listed in more detail on the page. here's the direct link to the faculty listing: Vanderbilt ADC Faculty hope this helps, melissa

so glad you're home. i thought i'd posted earlier - evidently not - but have definitely had you all in my prayers. i know first hand how exhausting the thrice daily IV antibiotic routine can be; whenever i'd get frustrated with an alarm going off for my next dose i would repeat to myself "it's better than the hospital, it's better than the hospital, it's better than the hospital...." you know where/ how to track me down if i can be of any help long-distance re: PICC line care/ management, antibiotic/ IVs, etc. as i've "been there, done that" too many times to keep count. were you (aka he) given a good "arm wrap" of sorts to help secure/ hold the PICC line...esp when it's not in use?? if not let me know & i'll do what i can to hook ya up (as i believe my supply closet still has some exras:-)) hang in there....to ALL of you. i know you're busy being MOM but don't forget to take care of YOU as best as you can too! hugs & continued prayers, melissa

there have been pretty extensive discussions about the cortisol stim tests over the years so you may want to do a search. if/ when i have some extra time i'll try to pull up some of the old topics myself & post the links but feel free to have a look yourself in the meantime (as i'm not sure when i'll be able to do the searching myself). if it helps w/ a search i believe that futurehope & myself - amongst others - were both fairly active in the discussions. myself & several others have had varied abnormal reactions to the tests with various theories re: said pathology & its potential relationship to our dysautonomias, various treatments employed & results achieved (or not), etc. i'll try to make it back to write more but at least wanted to offer the heads up re: previous discussions. all in all the test itself - while for me, having had a fairly dramatic abnormal (aka "positive") reaction, was not the most enjoyable - still doesn't come close to making my "least favorite medical tests" top 5 list...or even top 10. granted i've endured more testing than most - and thus been blessed (lol) with more perspective than many - but bottom line is that even in the worst case situation the cortisol stim test is unpleasant but not horrific....largely (in my memory) b/c the worst of it is incredibly short lived (and for most folks, non-existent!) good luck! melissa

if you're going to get anything "above and beyond" a standard chair - something that is definitely a good move for anyone who will be using a chair on a regular basis over a long period of time - the advice to get a PT eval for the chair is definitely spot on, though it doesn't always have to come from a "separate" PT source so to speak, as top-notch wheelchair distributors often have their own PTs on staff which - for most folks - can do a great job and - quite often - a better job than many other PTs. bottom line being that - wherever s/he is located - the PT needs to be one who is actually VERY well-versed re: wheelchairs....not just generally speaking but specific to the type that you need to be looking at & purchasing. i actually have writing a LOT about the wheelchair choosing/ buying/ fitting/ etc. process in recent posts so will try to find them & link them here. one impt item is that there is a HUGE difference between a lightweight chair & an ultralightweight. also the "info" you rec'd from the lady re: "how medicare works" is simply NOT accurate re: wheelchairs, standard chairs, etc. it very well may be true where she works but it is not true across the board. b/c if & when an individual's health situation dictates a higher level chair )according to medicare guidelines of course) - whether a power chair, an ultralightweight or lightweight, one that reclines, &/or any or all other numerous options & features - medicare WILL in fact pay. and it's certainly not after any sort of year waiting period with a standard chair. there are of course some situations wherein that is the procedure but it is not "all" or "most". along the lines of misinformation, if/when you are going to be pursuing any chair other than a standard PLEASE take the extra time & effort to find a distributor more specialized than the one you have been dealing with thus far. i cannot stress to you enough how important this is in SOOOO many realms. for any more specialized chair you should work with a distributor who specializes primarily - if not exclusively - in wheelchairs.....rather than working with a durable medical dealer who has everything from shower stools to compression garments to hospital beds to wheelchairs to ......you get the picture. insurance - medicare/ medicaid/ otherwise - should not be a limitation in this regard b/c they too value the more specialized (and thus knowledgable) dealer (not to mention that in some situations no one other than the more specialized distributors are able to work with a patient/ client) ; bottom line being that there will always be a "wheelchair only"(or close to it, i.e. mobility device-only) distributor in or near your area or - at the very least - one that serves your area via a bit of a commute (theirs, not yours; they will send a rep to meet you at no extra cost.) hope this helps. i'll look for the other posts/ links and post them if/ when i find them. and sorry for all the run around you've had. hang in there, melissa p.s. my ultralightweight chair isn't purple but is a sparkly deep blue that does have a bit of a deep violet undertone; the blue of my reclining (& leg elevating) power chair has a bit of a deep violet undertone as well

i received a call a few weeks back based on one (of several) autonomic-related research databases i'm in due to my young age and diagnosis w/ autonomic failure. they were hoping i might qualify for study participation but no cigar b/c i can't take the study medication by mouth - not to mention anything else for that matter (food, liquid, meds, etc.) - and as such the fact that i meet the "study criteria" is just as quickly nullified by the fact that i meant the EXCLUSIONS criteria too. eh well. in all reality i'm not sure whether it would have been a realistic proposition anyway as i would have required hospitalization for "safe" participation (according to those involved in running the study, though not any surprise to me) and they weren't sure whether that would be able to be arranged (aka paid for) seeing as it's not the typical protocol/ set-up. it will be interesting to see the study results as things evolve...... melissa

(((hugs))) add me to the list of folks who have literally "been there, done that". i'll try to get back with more of my story (related to the psych accusations) but at least wanted to post briefly now. hang in there & - while it doesn't fix the situation - know you're not alone and that many here (and elsewhere) have been there, melissa

meclizine is actually available over the counter, generally as "Antevert." personally i take it at times for nausea & vomiting flare-ups that are either directly related to motion sickness or which - at the root - are caused by my severe dysmotility but which, when aggravated, can (for me) occasionally come close to mimicking motion sickness. while it (the meclizine) is definitely not any sort of magic drug, it does seem to do me some good in the realm of calming down my nausea/ vomiting/ motion sickness, esp when combined with zofran; the two combined seem to do me more good than either independently. in terms of helping "dizziness" i suppose it depends what type of "dizziness" you're referring to as it's a term that can be used to describe many different things. for me being "dizzy" is always & only about my BP being too low &/or not having enough blood flow to my brain and, as such, meclizine would do absolutely nothing. if, however, you have "dizziness" that is more related to vertigo &/or motion sickness then it makes sense that the meclizine might be worth a try. all in all it's an inexpensive med that shouldn't cause much trouble if you give it a go. i do believe that it can cause a bit of tiredness for some (though i have never had that issue myself.) additionally it is quite short-acting so - if it does disagree with you for some reason - that will be short lived. hope this helps, melissa

neat idea....count me in too! (address coming shortly) { & if anyone oversees isn't able to do a square for themselves i'm happy to help do any/ all of theirs "by proxy", i.e. in the way they might want it done...or at least close to it!!}

you're in my thoughts & prayers mama morgan!! i know it must be terribly hard to avail yourself of your sister's generosity but - for your sake - i'm so thankful to hear that she's forcing it upon you. and in the end what is family for, no? bottom line being that i'm thankful you're on the schedule & look forward to hearing that you're resting comfortably (relatively speaking) in recovery. i'm saying extra prayers for minimal crazy happenings during your hospital stay too - healthwise & otherwise (i'll leave it to the imagination.....many of us here know you've had MORE than your fair share over the years ) - and hope that you are treated as superbly as you deserve. bye bye icky gall bladder!! melissa

steph - congrats on the quick appointment. i know that you realize it's unusual to get one that quickly, but as someone who has been around for many years - in dr. grubb's office as well as on this forum (and others) - i can only reiterate how truly amazing it is. i actually live within minutes of dr. g's office and have been his patient for almost a dozen years now. b/c of my own health situation i can't offer much help physically but if i can help in any way i am happy to do so. feel free to send me a PM (which always goes for anyone else travelling to see dr. g as well!). if we don't touch base before your trip & appointment i wish you all the best. as long as you don't go into things expecting a miracle cure you will be sure to find a advocate for your improved health. hang in there, melissa

so sorry to hear all that you & your family are dealing with at the moment. definitely one of those "when it rains it pours" situations and NOT easy no matter how you cut it. and nothing to say to make it better, okay, etc. it sounds like you're doing remarkably well considering. which is not to say that it isn't still horribly tough as it obviously is. i did want to mention the possibility of hospice to you though. they would be able to offer SO much at the moment for BOTH of your grandparents as well as the entire family. i HIGHLY recommend you look them up as i'm sure you wouldn't be sorry to have them on board. if you have any questions before feeling comfortable with contacting them feel free to let me know as i'm pretty aware of what/ how they provide/ work. here's sending prayers & good thoughts to you & your family for days that are a peace-filled as possible during this difficult time. all the best, melissa

does laying down or reclining help?

there is no way for any type of anonymous reply from anyone other than in multiple-choice polls. this is not something set or chosen by any of DINET's forum moderators or administrators but simply the way it is within the forum host that we use. regards, melissa/ Sunfish

already taken care of (before i'd even seen your note here). hope you are able to get some better clarity & answers - as well as some relief - sooner rather than later. melissa

to fill in the informational "blank" in my earlier post, i'll be taking 50,000 units twice a week for the next three months. b/c the gel caps aren't too doable for a J tube - poking/ draining them would be a pain & i'd end up losing half the dose anyway - i'm waiting on my friends at the compounding pharmacy to make/ compound a liquid for me which won't be until early/ mid next week. the first "option" i was given was a pre-made liquid that was 1000 units/ ounce which would have meant i would have had to take 50 ounces! uh...i don't think so . aside from it being icky, if i could get that much volume in me via my J tube i wouldn't be on IV nutrition/ hydration in the first place!! i am SO thankful for the compounding folks....and in the meantime hope/ plan to get a bit of D the next few days au natural (aka lying in the backyard) as it's supposed to be a BEAUTIFUL weekend here! sunny but not too warm/ hot (or cold for that matter). love it . melissa

i just got a call this week from my TPN/ nutrition team reporting my own low level of vit D (12-something). i don't know my exact dose (as i'll be getting it from the pharmacy later today) but know that i'll be taking a "pretty large dose" twice a week for the next three months & will then be checked again. i'm not sure what exact form i'll be taking, only that whatever it is must be something that can be taken via my J tube (which means either liquid or crushable so that i can turn it into liquid via mixing). in case anyone's interested in the specifics of what doses others are on & the like i'll try to remember to come back to post my dose once i have the prescription in hand. some time ago - perhaps 5 yrs - i remember dr. grubb testing my levels & they were then normal, though i don't recall where they were on the continuum (i.e. just barely normal, plenty of room to spare, or somewhere in between). if i recall correctly dr. g was pretty much testing all of his patients at the time & finding many to have pretty low levels, something he became aware of & interested in after finding out that he himself was significantly deficient. NW ohio - where grubb is located - is pretty dismal as far as the # of cloudy days we have but of course only some of grubb's patients were/ are actually local. in hindsight i very well may have been okay back then due to the fact that i was a lifeguard/ swim teacher & coach/ pool manager for years which put me outside a good 10-12 hours a day for at least three months of the year; this was supplemented by my being an outdoors-whenever-even-remotely-possible runner (i.e. even in snow & ice up to a point) as well as - for several years - my spending a good amount of time on the water rowing three seasons of the year. in other words i spent an above-average amount of time out in the sun relative to where i lived. AND i lived in maryland when i was tested & had for several years...not exactly the sunniest place but definitely more so than NW ohio (where i grew up & where i'm back living now). all in all though what i'm getting at is that i know my currently-deficient levels are a relatively new happening, i.e within the past 5 yrs or so? not at all surprising based on numerous factors: where i live, how often i'm unable to get outside at all combined with the fact that there is a very narrow range of weather conditions wherein i'm able to actually spend time outside, the fact that i have zero dietary intake orally & that only a very minimal amount of vit D can be included with / added to my TPN (IV nutrition), etc. unfortunately i've already ended up with some ill-effects that are likely related to my deficiency as well - at least in part - as a bone scan i had a few months ago put me in the osteopena category (abnormal but not quite osteoporosis).; the vit D issue though is certainly not the only issue that may have played into my bones no longer being in the best of shape (as i have had &/or have several other major risk factors that have likely contributed). but enough about me..... vitamin D deficiency is VERY common in the general population as a whole, so the fact that a good number of folks here on the forum are deficient is not necessarily anything outside the norm. different regions of the country come with more or less chance of deficiency, and the time of year actually matters as well, i.e. this time of year (the end of winter) is when levels will trend lowest whereas by the end of summer levels - normal or not - tend to be comparatively higher. melissa

i certainly don't want to sound like a scrooge & - as someone who has met a large number of my fellow dysautonomia-laden comrades over the years (at the NDRF conference and many other times & places) - i would certainly encourage any meetings that people might want to arrange/ coordinate on their own. but to add to what has already been said, i'll mention that - for a significant number of us on the site - long-distance travel isn't a feasible option. and of course for more than that it's a pretty major ordeal. so - for that reason as well as other factors (finances, time, etc.) - you might actually end up with more people at more regional events...not just collectively but at each one. of course my throwing out that thought does nothing to stop or discourage anyone from organizing a nationwide or even worldwide gathering wherever with an invitation to any & all who might be able to figure out some way to get there. if there are people able to do that sort of thing - health-wise, financially, & otherwise - then more power to you. last but not least - at the risk of telling you something you already know - there have been some meet-ups that have occurred over the years via coordination/ communication amongst site members within the same city/ state/ region. i know i met-up with folks in cleveland/ NE ohio a few years back, think that a group in NY got together, & know there have a been a few others for which i'm not remembering the location at the moment. the groups have never been huge - not the big get-together you might be envisioning (& which i'm sure WOULD be a neat happening) - but i'm pretty sure that most who have participated would give positive reviews. it is a shame that there isn't a large-scale patient conference for dysautonomia folks these days; i know i consider myself lucky to have been at one of the ones held by NDRF years back (made possible by the fact i lived only an hour away at the time!) and at the top of my "wish list" is being able to attend a patient conference related to some of my more unique health issues (i.e. being dependent on IV nutrition) b/c the experience can be pretty incredible. hopefully someday something of the sort will be able to happen again for folks with dysautonomia but - in the meantime - i would simply encourage people to forge whatever connections they can on a smaller scale. melissa p.s. if i would ever win the big-time lottery (tough since i don't play ) i'd gladly sponser a gathering myself .

before folks put TOO much time/ energy into replying to the original post & initial follow-up questions (as opposed to the most recent follow-ups) people might want to keep in mind that the post was first started in 2005, aka FOUR years ago. so regardless of whether or not the people are still active on the forum what was a pressing issue back then isn't likely to be the exact same now. just don't want people to be disappointed with lack of replies, etc. there have been a few posts that are years old bumped up recently via recent replies. it's allowed of course & can bring some good discussions to the surface at times but in general it's something to pay attention to b/c it can have an effect on how/ what one might reply to, i.e. someone who was new 4 yrs ago obviously isn't new now, etc. cheers, melissa

yes, in short. abnormalities in sweating - either too much (hyper) or too little (hypo) or not at all in any or all locations of the body - is a definable component of autonomic dysfunction. which is the very reason that there are two types of "sweat tests" that are sometimes done as a part of research, diagnosis, etc. this does NOT mean that everyone needs the tests nor that they are necessarily all that helpful (save for another confirmation of abnormality or dysfunction for some of us) but if you've noticed your own changes "unofficially" it could certainly be part of your dysautonomia. that said, there are changes that ALL women experience as far as sweating less/ more/ differently as they age. which is why - without testing - it's impossible to say whether the changes you've noticed are "dysfunctional" or "just" a normal variant of "growing up" so to speak. b/c there is a wide range of what's "normal" in the "normal" population as well (as well as people with abnormal sweating issues who are "normal" in every other way. even without testing though i would think that a more educated/ knowledgable physician (in the realm of ANS issues that is) would be able to give some feedback based solely on a clinical description/ report (in re: to whether what you've noticed is indicative of ans dysfunction). clear as mud? melissa

if it's actual GI bloating/ fullness with GI pain/ discomfort then it's not necessarily the pooling that others mentioned as that would more likely give you more systemic symptoms, i.e. make your overall symptoms worse. i obviously can't say for sure that you don't have that as a part of what's going on but it's not likely the "whole story". what you describe is actually a bit more characteristic of delayed stomach emptying, known more officially as "gastroparesis". it's very common in diabetics and also in folks with dysautonomia but can happen in anyone. you can search the term here on the forum &/or on the web in general. in short though it means that your stomach may not empty quite as quickly as "normal". to begin with DON"T WORRY!!! that won't help & can only cause more trouble unnecessarily:-) the first line treatment for gastroparesis - and something that won't hurt you if that's not what you're dealing with - is to eat smaller more frequent meals. in other words don't try to eat less overall but simply spread it out differently, i.e. 5 smaller meals rather than 3 regular/ larger-sized meals. you could certainly try that for a few days & see if it seems to help at all with no chance of any harm. after &/or in combination with that the other "dietary intervention" for gastroparesis is to limit fiber - especially insoluble fiber - as well as fat. if you do give this a try certainly don't do anything extreme without consulting a physician; that said it shouldn't be problematic to try to cut back on your fiber &/or fat content a bit. for instance you could eat cooked veggies rather than raw. before doing anything major w/ your diet it's of course best to check in with your doctor though. officially-speaking - if you read a bit about gastroparesis & think that it sounds like what you might be dealing with - the test for diagnosis is known as a "gastric emptying test", aka "GES". it's non-invasive & involves eating a relatively small portion of food (often scrambled eggs, though can be something else) which has a small amount of a radioactive tracer in it; via x-ray monitoring "pictures" then show how quickly (or slowly) the food moves (or doesn't move) through your stomach/ GI tract in comparison with the physiological "norm". as a bit of a sidenote, if you happen to search gastroparesis do NOT let yourself get scared by extreme/ severe "horror stories", i.e. people on tube feeding, IV nutrition, etc. while there are people who need such things it is the exception rather than the rule. so no need to get overly worried without cause; the majority of folks with gastroparesis find a good measure of relief via changes in diet/ lifestyle &/or medications. hope this helps, melissa

yep - as mamamorgan said it's definitely not "most"; the folks who are most severely/ seriously affected are going to be the ones who chime in to the discussions. and are going to be people who - in addition to people newer to diagnosis - are most involved on message boards like this. as such, to someone observing the overall population, so to speak - whether in terms of wheelchair use or anything else - is going to often appear much "sicker"/ disabled/ limited than it truly is statistically speaking. some of us chiming in to the wheelchair discussions (including me) have diagnoses other than &/or in addition to "just" POTS too (not that POTS isn't PLENTY to deal with itself! certainly i am NOT trying to imply that it's not!!) i certainly know what you mean in terms of feeling "too young" for the motorized cart, etc. but at the same time it's important - as you seem to be doing - to not let that issue keep you from doing/ utilizing whatever will help you be as active as possible, get out & about, etc. i'm 29 and - amongst other things - i certainly wouldn't have EVER believed that i would be getting fitted for my first wheelchair at 24/25 &/or a reclining power chair at 27; and that's only the mobility-related stuff! but you do what you have to do, ya know? b/c while i definitely have my moments/ days of hating the whole ordeal, for the most part i'm thankful/ glad to be able to get out at all & to simply still be alive, a perspective i suppose i "earned" after a year & a half period wherein i couldn't get out at ALL & came very close to dying more than once. but i digress. what i'm getting at is that - most days - i'm thankful that i have the wheelchair(s) i do b/c i'd otherwise be 99.9% homebound. don't get me wrong that i'm still stuck at home WAY more than i'd like, but without my chair(s) i would never be able to get out anywhere at all. along those lines i have known people who stay home more than they otherwise would have to solely b/c they don't want to deal with using a chair/ scooter & - however tough it can be to use any sort of chair/ scooter/ walker/ etc. - i find it much sadder (is that a real word?!) when folks miss out on more than necessary b/c they can't/ won't take the plunge. which i realize is far more commentary than you asked for. i'll shut up now:-). bottom line (aka answer to your question) is that no, "most" folks with POTS/ dysautonomia don't end up needing to use wheelchairs. hope that helps clarify, melissa

me again:-) first of all, in my initial reply (under this thread, that is) i failed to offer my own personal empathy/ sympathy/ understand. do know that i most definitely have PLENTY to offer in the arena of nausea/ vomiting/ GI issues & certainly feel for anyone dealing with any or all of the above to any degree. it's something i deal with daily to some degree & have for years; i'm on gastric drainage now 24/ 7 which has helped tons but it's still a major issue for me that - in addition to my inability to be upright for any "normal" length - is definitely my most disabling & life-altering issue. that said, i did ramble on quite a bit in a post recently so will post the direct link to that here. it's framed in the context of weight loss & nausea rather than nausea/ vomiting/ dry-heaves but it's all related as far as i'm concerned. by no means do all with some of the issue have all (i.e. not everyone has weight loss) but my ramblings are meant to cover all of the above. my long/ detailed post is in the middle of the second page of the post. here's the link: Possible reasons for nausea, vomiting/ dry heaves, weight loss, GI pain/ upset, etc. (esp. in those w/ dysautonomia) hope this helps, melissa