Sunfish

in short - based on my own experience as well as what i've seen others expeience over the years - i'd say that folks with dysautonomia experience various degrees of nausea &/or vomiting related to one or both of two things. the first is more systemic, often correlates with the severity of one's overall symptoms, can correspond with orthostatic symptoms, etc. the second is a more concrete/ tangible motility disorder, i.e. gastroparesis. some folks definitely have both and both can and very often are directly related to autonomic dysfunction/ neuropathy. unofficially i would "place" cyclical vomiting under the first of my two "categories" for what it's worth. i've written at length (in replies to other posts) about nausea/ vomiting issues in the past so will try to recall & then find those ramblings in case they might be helpful to you (or anyone else). hang in there! melissa

the premise behind the initial question wasn't exactly the same, but there was a post that was very similar this past fall wherein myself & others offered some other thoughts/ ideas/ experience. as a matter of fact i sort of wrote a book . here's there link: What do you do to entertain yourself? hobbies, etc.? as a follow-up to the tome i wrote then i've since learned to knit, as well as to do felting with knitting or crochet (as opposed to needle felting...haven't tried that). i also finished my "movie project" which entailed watching all of the academy award best picture winner's from the inception of the award ceremony (1928). i'm now casually making my way through anything i haven't already seen from the American Film Institute/ AFI's top 100 list. i can't remember whether i mentioned it previously but if you (&/or anyone else) is interested in starting or further developing just about any craft or hobby the library is generally a great resource; i have reserved/ checked out a LOT of "how to" books there rather than buying them myself...everything from beading to orchids to felting to knitting & crochet. hope this helps, melissa

flop & others - i'm too sleepy to write a more thorough response at the moment but did just want to mention that vandy's directive to not stop meds is not necessarily for the visit/ appointment/ consultation but rather for the at home (or in office) readings that patients are asked to record & send it in advance. i obviously can't speak for anyone else's situation - including twinmom's - but know that myself & many others who have been to vandy were told to stay on our meds for pre-admission paperwork, application, etc. but were indeed asked/ told to be OFF all ANS-related meds for our actual visits to vandy. so that may be the scenario in this case as well.... hope this helps clarify, melissa

firewoman- please take a deep breath & a step back & see that my post was NOT in any way intended as any sort of affront to you &/or your post or comments. not at all. there was no part of it negating any of what you wrote. if anything it was only meant to provide some added detail/ info (the portion re: gallbladder testing that is) b/c - as someone who has been on the forum for years - i have seen & heard the issue come up many times...both on the forum & by way of PMs & emails that people have sent to me personally. i did not say ANYthing and certainly did not in any way mean to imply anything to denegrate anything you wrote in your post. not at all. my post was meant to be read on its own....not as anything negative against anyone else's, yours included. your input on the forum - in this post/ thread & elsewhere - is as valuable as anyone else's & if you hadn't mentioned it i might have failed to even add the gallbladder possibility to my own list b/c none of us can remember everything that's relevant all of the time. i was in no way trying to comment on or imply that YOU didn't understand/ know about the ins & outs of gallbladder testing but simply was trying to pre-empt potential confusion for others who might not already be as acquainted with it &/or informed about it as you already are. b/c i've seen it (meaning misunderstanding &/or confusion) happen more times than i can count i simply was offering extra detail/ explanation BEFORE folks asked/ questioned rather than waiting until after-the-fact. (b/c i actually had already received one PM related to this thread wherein one individual was asking me to explain the percentages involved in G.B. testing.) hope this clarifies a bit. cheers...and don't ever stop posting, melissa

ok. to michele (the original poster) &/or any or everyone else considering any similar venture, GO. in case you haven't gotten enough of a push already from others, GO. unless you have a doctor telling you that it's forbidden, an impossibility, etc. GO GO GO. it might be tough at times, you may pay for it afterwards, etc. but neither of those issues are reason to stay home. they're simply not. without wanting or meaning to minimize anyone's concerns, anxieties, fears, real signs/symptoms, etc., unless you have a physical issue making whatever travel/ trip/ event 100% impossible then DO it. any fear, concern, etc. that can be worked around, overcome, pushed through, etc. is not really reason to not proceed. it's simply not. instead it's something to be worked around &/or overcome. i'm thankful that - in the midst of a myriad of health craziness over the years - i have always tended toward being unreasonably willing to proceed with plans/ events (even to a fault, aka when i was a bit crazy to have done so) but having heard from many others over the years on this forum & elsewhere, as well as having lived through my own ambitious undertakings, i can tell you that i have never heard of ANYone being sorry for having pushed beyond what's comfortable. and as someone who physically can no longer "pick up & go" to any degree b/c of the complexities of my medical realities i really truly just want to encourage you to go for it. you won't be sorry & most likely will be thrilled for having done so. even if it means you're a bit wiped afterward. and you'll likely remember the good far more than the being wiped. good luck! melissa

while mestinon - for me - was most obvious in its help w/ my GI motility issues, the official studies that have been done re: its use - at mayo & at vanderbilt - have been with regard to it helping with orthostatic intolerance/ hypotension issues...not any variety of GI motility issues. for me it was also part of the combo that gave me the most "upright time" so to speak when i was a research patient at vandy years back. so even though the GI help was more obvious to me it technically helped me orthostatically too. hope this helps clarify, melissa

in short, for me it came down to the fact that no amount of flexibility, # of options, etc. re: mobility would make one lick of difference if i couldn't transport it readily. and for me to have what i needed, i.e. a high enough back with handles for others to push me when i'm unable, a rigid frame wouldn't have been realistic to transport. which meant that, in the end, it really wasn't much of a choice for me. hope that makes sense? as a bit of a sidenote, it sounds like you experienced for yourself why i go on & on about what a difference having an ultra-lightweight chair truly makes when it comes to being able to mobilize/ push oneself, eh? see there IS some method to my madness afterall! . good luck with your final decisions... melissa p.s. some (many?) parapalegics &/or other wheelchair-users are able to transport rigid chairs easily but - at least in my experience/ encounters - these folks are much healthier/ stable than myself and don't have the need to have a chair with handles (aka a back that's high enough for handles) so that the size of their rigid frames are much more reasonable than what i would have needed. for me the size of a rigid chair that i would have needed would have hardly (if at all) fit in the trunk of my car much less inside the car so that i could get it in/ out myself (on good days; i do it by sitting inside & pulling it in after me from the backseat afterwhich i then climb up front; this was invented by necessity after fainting in parking lots on several occasions when i tried to get my chair in my car while standing outside.)

i don't now but used to. for what it's worth it was actually the combo that i was on when discharged from vanderbilt's inpatient clinical research shin-dig. good luck! melissa

dr. blair grubb is in toledo, ohio @ University of Toledo Medical Center (formerly known as Medical College of Ohio &/or Medical University of Ohio). his contact info is under the physician listings on the main DINET site. generally it takes about a year to get an initial appt, you need a referral, etc. re: mestinon (brand name)/ pyridostigmine bromide (generic name), there have been a LOT of discussions on the forum re: peoples' experiences; if you're interested a search by either name will give you more reading than you'll know what to do with! hope this helps, melissa

E. M. - a real bummer that you "lost" your chair. gggggggrrrrrrrrrrrrrrr. glad to hear that you were able to figure out an alternative though. spinlife is a great resource & good prices too for out-of-pocket. glad you found them & hope that your new chair is all that you hope it will be & more! mae - re: the idea that pushing one's own chair would "defeat the purpose" i certainly see where you're coming from re: the fact that it can increase one's heart rate. and it's definitely true that not all of us can push our own chair &/or push it all of the time. but for some of us pushing - at least some - can actually be a way to keep up a bit of conditioning. and while it may wear us out or make us feel cruddy at times it doesn't necessarily "defeat the purpose" b/c the MAIN purpose of using a chair - at least for me - is to keep me from ending up on the ground, aka fainting. and/or to a lesser degree, for many it's main purpose is simply to avoid having to be entirely upright, often the most stressful/ strenuous position/ situation for our bodies. obviously we're all different but hope this helps/ explain/ clarify how/ why some of us may push ourselves...at least some of the times (b/c i certainly cannot always do so; i have used scooters as well, sometimes need to be pushed, & also have a power chair). a few additional thoughts/ comments related to em's (emily's vs. earth mother's) questions & other related issues: without wanting to be a broken record i did again want to reiterate the difference between the types/ categorizations/ weights of manual chairs. while most people do realize that there is a difference between hospital-grade/ standard chairs that are super heavy/ bulky and lighter-weight options, not everyone realizes that there is also a difference - a significant one - between "lightweight" chairs & "ultralightweight" chairs; rather than simply a manner of semantics it's a difference that can be 10 pounds or more, a difference that for some (definitely for me) makes the difference between being able to mobilize a chair independently on at least some occasions. i'm not by any means trying to say that everyone needs an ultra-lightweight or would choose to have one as the options are different, i.e. generally speaking ultralightweights won't have prop-up leg rests but along with being lighter will often be slimmer/ smaller. amongst other things. most of all i just want people to realize that there IS a difference b/c i think i've noticed some using "ultralightweight" and "lightweight" interchangeably, which is simply not the case. but moving on..... emily glad to hear you have someone scheduled to come out for a fitting AND that you'll be getting a loaner while waiting for your permanant chair. re: whether your chair has already been approved, in all likelihood it has NOT. having gotten two chairs i'm 99% sure that - unless MA is vastly different than just about any/ every other set-up around the country - technically your chair cannot be approved until AFTE the exact request/ order is made, aka until after the guy comes out, you're measured for & you choose your exact chair & its specifications, etc. and while i definitely understand & appreciate your logic - it may seem a bit nuts that he would bother to come out & spend lots of time without without it already being approved - in reality it's simply the way they are set up to work and b/c it's the way the approval system is they do it just that way almost all of the time. that said, they wouldn't be setting up an appointment with you if they didn't have sufficient info from your doctor so that - based on their plethora of experience with getting approvals - they are pretty confident that they won't have any trouble getting the approval and are in fact prepared & willing to go to bat for you to get that approval. so while on one hand i'm telling you that you haven't yet gotten the approval, on the other hand you can largely rest assured that - eventually - it will happen. from what you've shared it does sound like you're working with a good place b/c the way the process is going is how it should ideally go with the higher level dealers. it sounds like you're in good hands:-). which is obviously only backed up by the fact that you have a friend who is a full-time wheelchair user who gives them a thumbs up. but on to your other questions...... re: working with a PT/ OT, it's something that is much more important for those who, for instance, active para/ quadra-palegics. they have to learn to transfer, balance properly, avoid pressure sores & use their chair to the maximum degree possible within the extent of their health situation. since we are able to shift/ move/ mobilize much more flexibly it's not needed nearly to the same degree. that's not to say that it might not be helpful to have a PT/ OT offer a few helpful pointers on a short-term basis. and/or for anyone strong/ healthy enough to learn "advanced wheeling" (i.e. wheelies, jumping curbs, etc.), a PT/ OT could help in that regard; i know i'm definitely not physically in that condition & would guess many/most others here that have need for a chair wouldn't be either. also - for what it's worth - you might be interested in knowing that many of the fitters who work for dealers/ distributers are in fact PTs or OTs themselves; i know that the one who fitted me for my first (manual) chair was a PT assistant & the one who fitted me for my other (power) chair was (is) a PT. so essentially my vote is that - for our purposes - an additional PT/ OT isn't necessarily needed. there's a big difference between someone using a chair part-time & someone who needs a chair 24/7...even if the difference is minute so that the part-time merely means that we're able to take one step to get into the chair versus someone who can't do that at all. it's that sort of differences that - at least based on what i know & am familiar with - is generally what dictates a PT/OT needing/ not needing to be involved. of course if you really want to work with a PT/ OT & have the means to do so it certainly wouldn't hurt anything; there were times that i did consider doing so but in the midst of everything else it never was a top priority. bottom line though - to answer your question - is that the guy from the chair will likely be VERY capable & more well-versed in chairs & the options than most PTs/ OTs. of course if at any time you're not comfortable with him or with the company itself then it's entirely your call to stop the process (until you sign on the dotted line that is ). oh - and re: things happening "faster than you expected", you might still get to do your fair share of waiting:-). perhaps not, but in my experience you'll have the waiting AFTER you actually meet with the guy & get fitted. the good thing is that you'll have a loaner chair, but since that's the period during which the actual approval has to happen it's generally the longest / most drawn out. perhaps you (& i) will be pleasantly surprised but it's highly likely that there will be some back & forth that will take some time somewhere along the way. hope this helps, melissa

i'm too tired to write a more thorough or thoughtful post at the moment (sorry ) but did at least want to let you know - as someone who has been in the "dysautonomia world" so to speak for almost 12 yrs now (as a patient as well as in other assorted ways). as such i can assure you with 200% certainty that all of the signs & symptoms you are experiencing are not at ALL uncommon within a diagnosis of dysautonomia. i of course cannot guarantee that nothing else is going on in your specific case, but having read all of your posts on the forum thus far there you have not mentioned anything that falls outside what can easily be "just" dysautonomia. while i know that low bp can at times overtake more discussions, i can assure you that a significant number of others here on the forum deal with intermittent high blood pressure. additionally it is not particularly far-fetched for your doctor to suggest that your readings may be RELATED to your anxiety; note that i did not say that anxiety is the sole cause of your symptoms, and it doesn't sound that your doctor is alleging that either. but your anxiety re: your BP/ HR readings may very well be yet another aggravating factor, which - in combination with other triggers such as running up & down the stairs, standing up, etc - could easily result in the numbers you're reporting b/c in those with dysautonomia the underlying control mechanism for controlling the BP & HR isn't quite what it should be; in other words it's not the same as it would be to suggest the same thing (i.e. that the BP/ HR fluctuations are related to anxiety) to someone without dysautonomia. so while i realize that it's easier said than done, the very numbers that you're so anxious about might very well improve somewhat if you could somehow remove - or at least reduce - the extent/ degree to which you are anxious; sort of a catch-22 but a likely reality all the same. by no means should you resign yourself at this early point in your dysautonomia-journey to not improving and should certainly do whatever you can (within reason) to work towards improved health; this could mean different medication(s), lifestyle change(s), a new physician &/or some combination of these things &/or something else. i'll try to get back & reply more personally & thoughtfully when i'm not falling asleep as i type. for now i hope some of the above info helps at least a bit. cheers, melissa

tammy - is your brothers a motorized chair or manual? if motorized the car sick issue is one that i dealt with a bit until i got used to the controls so that my driving, so to speak, was smoother. and the issue isn't one that's as likely - and not something i've ever experienced - in a manual chair....unless of course someone is pushing you wildly. cheers, melissa

nope, not possible. they may effect one's skin but that's about it. doesn't mean that you might not find something somewhere that says they can &/or will do more but people can say/ claim anything about anything. in the end, however, the claims won't/ don't hold water; they simply aren't scientifically or physiologically accurate. so, for better or for worse, the increased salt has to come in through your mouth/ diet. hope this helps, melissa

hi all - i'm not in the underweight/ too much weight loss category these days, but in fact cannot eat/ drink/ digest AT ALL any longer so have certainly "been there, done that" before reaching the extreme place i'm at GI-wise now...and certainly i'd be horrible underweight/ malnourished now if it weren't for the proper quantity of total nutrition & hydration that i receive via IV. so i thought i'd chime in a bit as someone who, in the past, had reason to learn/ explore A LOT in regard to trying to maximize caloric intake, fluids, etc. when eating was a constant battle against an uncooperative body/ system. before continuing, however, i want to emphasize that my situation is NOT typical & thus VERY unlikely to be where many of you (if any) are headed. so you are NOT allowed to freak out about the possibility! before moving on to the body of my ramblings i want to comment on the potential involvement of gall bladder problems that has come up. it is very much the case that it CAN - for some - be a problem related to dysautonomia, or - more exactly - the autonomic neuropathy that some of us with dysautonomia have as a component of our diagnoses. a problem with the FUNCTION of the gall bladder, rather than the gall bladder stones seen more often in the general population, is the problem that can be due to autonomic neuropathy and is more likely to be an issue for (though is not exclusive to) those with some other GI dysmotility. to clarify potential confusion, however, re: the actual diagnosis/ existence of a problem, it's important to know that the 35% number that has been mentioned, known as the ejection fraction, is in fact the cut-off/ threshold for what's considered NORMAL in the general population. this ejection fraction, the representation of how well one's gall bladder functions, is measured by a test known as a "hyda scan" and a result of 35% is in fact ENTIRELY NORMAL. so....while it is understandable that some might get frustrated at a doctor's seeming unwillingness to treat what they feel has been a finally discovered problem, i.e. an ejection fraction that is perhaps in the low 30-percentiles, that result is not in fact a pathology/ problem at all. doctors differ in regard to the "magic number" they feel is sufficient justification (aka low enough) for surgical intervention, but regardless it is simply a matter of anatomy & physiology that no one has an ejection fraction of 100%, or even one that is in the 90s for that matter. i can't recall what the potential upper limit (aka highest percentile) might be in the general/ health population, but i'm thinking it's perhaps in the 50s (don't quote me); regardless it is definitely not incredibly high, and many in the general population would in fact have results in the 30s. so.....with 35% being the very definition of normal/ full functioning & a good number of "normal"/ asymptomatic individuals with results in the 30s, it would obviously be illogical, not to mention irresponsible, to suggest &/or agree to surgical intervention - wrought with potential complications in the best of cases - for a situation that is not in fact abnormal/ problematic. hopefully this clarifies things a bit:-) that out of the way, i'll offer a few other thoughts..... being too underweight will quite likely make other dysautonomia issues worse. even more so if you're not getting enough fluids on a daily basis. from both my own experiences & those of others i've come to realize that there are several different issues that may factor in to issues with appetite, weight loss, nausea in those with dysautonomia. some are easy to combat/ treat while others not so much; and of course some folks may have more than one factoring in simultaneously. for thoroughness-sake i'll like all possible issues here, though i know some have already been mentioned. potential culprits include: 1.)dysautonomia/ orthostatic-related loss of appetite, nausea, etc. (different from actual gastroparesis as listed below in #3): while seemingly a bit vague, and not a technical "diagnosis" per se, this is something that many with dysautonomia deal with in some measure at some point; it usually corresponds in its severity &/or very presence with severity of overall symptoms &, as such, is many times an issue early in illness/ diagnosis &/or any time in which symptoms are increased; for some symptoms may correspond to orthostatic-related symptoms, i.e. increased nausea after standing for too long; in most cases symptoms (loss of appetite, nausea, etc.) deter people from eating but do not result in extreme nausea &/or vomiting if/ when someone pushes through them to eat/ drink regardless 2.) post-prandial hypotension: related to excessive blood pooling in the stomach/ intestines after eating, particularly after larger meals &/or meals with higher amounts of carbohydrates; tends to result in increased systemic symptoms of dizziness, fatigue, etc. rather than GI-related symptoms (nausea, vomiting, etc.) 3.) GI dysmotility (gastroparesis/delayed gastric emptying, intestinal psuedo-obstruction, etc.): this can/ does certainly affect one's appetite, but if this is the case that will NOT be the "only" issue; if this is the problem then once someone has eaten there will also be some measure of nausea, vomiting, bloating, early fullness, abdominal pain, etc.; symptoms/ can be intermittent rather than constant; can be caused by autonomic neuropathy that some of those with various dysautonomia diagnoses MAY have; gastroparesis, the most common motility disorder, is diagnosed via gastric emptying test; varies greatly in severity 4.) celiac disease &/or other food allergies/ intolerances (gluten, dairy, lactose, casein, wheat, etc.): while more specific testing exists for actual celiac disease & allergies (blood tests, endoscopic biopsy), some individuals learn that they have intolerances to one or more dietary components that have a significant effect on absorption, symptoms, weight maintenance, dysautonomia symptoms &/or other health issues; dr. rowe, a pediatric dysautonomia specialist at johns hopkins, has found some patients to have an improvement in dysautonomia-related symptoms after elimination of casein &/or gluten; for intolerances that can't be determined by definitive testing the only way to determine this issue is through dietary elimination; actual celiac disease causes actual damage to one's intestines that, untreated, increases over time & can cause SIGNIFICANT inability to absorb essential nutrients, major weight loss, etc. that can only be treated via a gluten-free diet (aka impossible to combat with "just" increased caloric intake if still consuming gluten) 5.) IBD (inflammatory bowel disease, aka ulcerative colitis or crohns disease): NOT the same as IBS (irritable bowel syndrome); symptoms may include issues similar to those seen in above-listed issues (#1-4) but underlying problem is an autoimmune attack in the GI tract that can be definitively diagnosed (or ruled out) via colonoscopy &/or endoscopy (crohns only); theoretically possible but no more common in those with dysautonomia than in the general population 6.) medication-related issues: many meds can cause varying degrees of nausea, weight loss, decrease in appetite, etc.; can be a short or long term issue which may or may not abate over time; may be "treatable" by way of adjusting dosing schedule, eating with medication, etc but at times can cause symptoms that are significantly detrimental to ones health that alternative treatment options should be considered, though only via collaboration with the treating physician 7.) any/all other possibilities: included only for the sake of thoroughness, there are obviously endless numbers of rare GI &/or systemic diseases/ disorders that can cause GI-related symptoms, loss of appetite, etc. that anyone "could" have but which are not likely in the general population &, while not less likely, certainly no more likely for those with dysautonomia while it would obviously be unlikely for any one person to be dealing with ALL of these possibilities, it is certainly not far fetched for an individual with dysautonomia to struggle with more than one of them. for anyone with significantly bothersome loss of appetite, weight loss, nausea, &/or other symptoms it is certainly worthwhile to figure out the "why" behind what's going on, whether the end result is some sort of helpful treatment strategy or simply a confidence that the trouble can be chalked it up to another fun element of dysautonomia. coming from someone who has "been there, done that" in regard to it being super tough to get enough in i really want to encourage you to FORCE yourself to eat if/ when the issue is "simply" that you don't feel like it, don't have an appetite, etc. in other words if the biggest hurdle is making yourself do so, but if - once you eat - you don't have issues of being sick (GI-wise or otherwise), then i'm trying to strongly encourage you to figure out whatever strategies might work for you to somehow make yourself. if/when possible it's best to make sure what you are eating/drinking is as calorie-dense as possible, including making sure that everything you're drinking has at least some caloric/ nutritional value (aka no water, diet soda, etc.)...though obviously if richer items back-fire in that you can't eat/ drink as much of them then you have to strike a balance to determine how to maximize how much you're ultimately getting in. i also know people who set alarms to signal "time to eat/ drink", etc. now that i'm writing i'm remembering that i wrote a decently long/ thorough post some time back re: some ideas for a member struggling so will try to find it & post the link here. if, instead, you're someone for whom the issue is not "just" a lack of appetite but rather some measure of increased symptoms once the eating/ drinking happens then obviously more needs to happen than making oneself eat no matter what. and of course knowing what the issue is generally necessary before its possible to know the best strategy. so...for now i'll leave it at that, though am more than happy to help anyone in any way that i'm able based on my own experiences over the years. hope this helps, melissa

another vote of "just me"...anyone else (if they exist) would have to be at least several generations back. i never had a migraine until years into my fun with dysautonomia; i got my first ones during a significant "flare-up" that was a notable chapter of my downward progression over the years & they've visited me intermittently since. all in all, though, they are not near the problem for me that they are for some others and they rank relatively low on my list of "most problematic &/or disabling signs & symptoms." when i get them they're definitely rough & almost always incapacitating for several hours (or up to a day) but i don't get them all that often so that if they were the only health issue i had i'd be thrilled. melissa

rick (& michelle) - while i'm certainly not telling you to not pursue additional testing, before you think that a 4-5 hours trip is an absolute must i do want to clarify that most of those with most dysautonomia diagnoses - including many (or most?) forum member - don't EVER have a "full ANS work-up" per se. in many (perhaps most?) cases it's simply not considered necessary or even helpful; to varying degrees this is the general opinion of many (if not most) of the docs who specialize in &/or routinely/ primarily treat those with autonomic dysfunction. while there can certainly be some testing - autonomic &/or otherwise - that can help to ensure proper & thorough diagnosis as well as the best possible treatment in cases such as michelle's, it is equally important to realize that some of the testing included in a "full" ANS work-up simply has little to no affect on treatment decisions and is rarely (if ever) used outside of a research setting. so what does or should this mean? it means that before you start packing &/or calling around with pleas to get any & every available ANS-related test scheduled asap it would probably serve you best to talk your questions & concerns related to testing with the dysautonomia-competent doctor you've seen & are working with. there may be one or two additional ANS tests that s/he feels could help round out michelle's diagnostic picture, it may be that s/he feels that a different arm of testing or consult (i.e. seeing an endocrinologist or allergist) might actually make more sense as a "next step", OR s/he might just as likely feel that it would be best to press pause on any additional testing for now in order to focus on adjusting meds/ treatments for a period of time. b/c while i'm sure it seems like you've already been trying things for a long time & haven't been getting as far as you need to or would like, in reality it very often takes a good deal longer for people to find what works best; it's no exaggeration to say that it's not unusual for people to spend many months or even years of trial & error & adjustments before finding the best "med cocktail" & other treatments/ lifestyle changes that allow for the best possible management of symptoms. i'm sure that's not what you want to hear (that it can take months or years) but it's the truth & many here on the forum can attest to it. but moving on to the specific questions you raised... re: the possibility of "substituting" ritalin for midodrine i agree with much of what others have said re: it likely doing more harm than good for michelle. since both are short-acting meds & there's no way to ever know for certain what will be the "magic pill" (or as close as one can find) for a given individual i certainly wouldn't dismiss giving it a shot (as you're currently doing i think? so that i'm assuming your doc suggested it &/or is at least on board with the trial...) to help you understand the two meds and their relationship a bit better i'll try for a quick explanation/ history lesson: as you may know, ritalin has been around far longer than midodrine. years back (perhaps 20 or 25? not sure on the dates but at a minimum it's over 15yrs back) some doc/ researcher/ clinician realized that ritalin - and specifically the fact that one of its common side effects is an increase in blood pressure - could be helpful in the treatment of those with orthostatic hypotension and quantified this off-label use in clinical research studies. while the studies did confirm the possibility of a benefit, for some the benefit brought with it unwanted symptoms as well that were related to the stimulant properties of ritalin, often more prevalent in those without ADD/ ADHD. it was this pro-con element of the drug that in fact led to the eventual development & use of midodrine. the sometimes unwanted effects of the ritalin were connected to the elements/ properties of the drug that had crossed the blood-brain barrier. the beneficial property of the ritalin (for those with orthostatic hypotension) was, on the other hand, the peripheral vasoconstriction that many times caused an increase in blood pressure and which was an effect of the component of the drug that did/ does NOT cross the blood-brain barrier. so....high minded scientific pharmacology researcher developer folks went to work to try to create the helpful "half" of ritalin - the part that increased blood pressure and which didn't cross the blood brain barrier - independent of the other "half" (the part that crossed the blood-brain barrier & caused unwanted effects in some with OH but not ADHD). the result?? MIDODRINE!!! the first drug actually designed "just" for a component of dysautonomia! (as opposed to the gazillion others we take off-label, for their "side effects", etc.). so....getting back to michelle, b/c - as others have mentioned - ritalin's stimulant activity has a high likelihood of increasing tachycardia (amongst other things), there is a high chance that it will hurt just as much - or more - than it will help. technically - and in high enough doses - it "should" theoretically be able to do what midodrine does in terms of vasoconstriction/ increasing blood pressure; in practice, however, things don't often work so clearly, and the additional side-effects that will likely accompany the quantity she would need to replicate the same effect on her blood pressure have a high likelihood of causing trouble. as others have mentioned there are certainly some of us who do successfully take ritalin or other drugs in its' class (concerta, daytrana, etc.)...either independent of or in addition to midodrine. personally i take high doses of midodrine around the clock and also take a low dose of daytrana or ritalin during waking hours (currently shifting from daytrana, aka ritalin in a patch, to "oral" ritalin - aka via my j tube - due to insurance/ cost changes); at one point in past years i was able to take concerta (essentially a long-acting form of ritalin) INSTEAD of, or to replace, my midodrine - a rare respite from almost constant midodrine usage in my past 11+ yrs since diagnosis - though i did still take one dose of midodrine upon waking at the time as that "kicked in" faster (approx. 30 min) than the concerta (90-120 min.) as well as for occasional/ as needed extra "boosts" on longer-than-normal days, when acutely ill, etc. so in theory what you're asking about "can" be done. we're all different, though, and for me we have always wanted/ needed the stimulant component of ritalin (& the similar other meds) so that i have taken (and currently take) them for the very reason that many cannot tolerate them. i don't have the excessive consistant tachycardia that michelle and some others deal with but rather have autonomic failure with a heart rate that goes anywhere & everywhere (but in recent years never consistently high for long periods); for me hypotension and disabling fatigue - cognitively & physically - are much more prevalent & life-hindering to the extent that i in fact need the stimulant component of the ritalin or ritalin-type meds to function at even the greatly reduced level that i do. sorry for throwing what is likely way more of my own history/ info your way than needed; just an example of how what you're trying can & does make sense for some (aka me) but might not for others with different s constellation of symptoms. re: the possibility of using a beta blocker in conjunction with florinef &/or midodrine &/or ritalin &/or any other meds intended to raise blood pressure, it is definitely a technique/ combo that some find quite effective. some of the top autonomic specialists (i.e. grubb, vanderbilt, etc.) are vocal advocates of the fact that many patients do better on smaller doses of more than one med than they do on a larger dose of any one med. over the years i've had conversations about this reality with dr. grubb, doctors at vandy, & other ANS specialists (in ohio & maryland) and i believe it is even discussed in some of the clinicial papers related to treatments of one or more of the specific dysautonomias. the beta blocker with midodrine &/or florinef &/or mestinon is definitely a combo included by some docs in the possible "several meds at smaller doses" options for some patients. my best "med combo" at one time - as "officially" found/ documented during my two weeks as a research patient in medication trials at vanderbilt several years back was in fact mestinon, midodrine, & a tiny dose of a beta blocker. while it does seem a bit counterintuitive to take meds that seem to have opposite intents, in some a combination is effective b/c each has a different mechanism of action that doesn't so much cancel the other out but instead works in conjunction with the other to gain the wanted benefit of each without (hopefully) the unwanted elements. hopefully this makes at least a tiny bit of sense? last but not least i want to throw in my two cents re: the very real possibility of focusing too much on "the numbers" (blood pressure, heart rate, etc.). it is something that can definitely happen & is perhaps most common when folks are fairly new to diagnosis &/or active treatment. in the process of trying to move full speed ahead through different treatment options & possibilities and wanting to quantify - understandably - what works & what doesn't, many people go about trying to achieve the "best" BP & HR readings as much and for as long as possible with the utmost goal being to get a grasp on an illness that often defies attempts at simple explanation &/or definition. over time, however, people find that "the numbers" are only part of the picture; b/c while BP & HR - or more aptly keeping one's BP & HR within acceptible norms as much as possible - is certainly an important element of treatment, it is in reality only part of the picture. one of the biggest frustrations for many - newly diagnosed or not - is the fact that an improvement in BP &/or HR readings does not always bring with it a relative improvement in symptoms or functioning. the reason behind this is multi-faceted, varies from person to person & symptom to symptom, and is not always well understood, but in the end means that a singular focus on "the numbers" is a one that will often end in frustration & disappointment. there's no "magic answer" to this as there is definitely still reason to pay attention to what various treatments (lifestyle changes, meds, etc.) have on "the numbers" so to speak. but in the end what's most important is not only an improvement in one's BP & HR readings but a rather a more holistic maintenance/ improvement of symptoms. in other words how does one feel? a lot more could definitely be said in relation to how "the numbers" may or may not react to how one feels but for now i'll leave it at that. but never dismiss a med (or other treatment) that seems to offer a degree of consistent improvement - however small - regardless of what "the numbers" say; obviously a "good day" here or there may be coincidence, but there are various reasons that a treatment might help without offering any corresponding improvement in "the numbers" such that - at the very least - the report of any improvement in symptoms may be key in the ongoing adjustment/ changes of one's treatment regimen. hope this helps, melissa

while the point to not uniformly dismiss anything & everything as ALWAYS being ANS-related is very well taken (and a somewhat tricky balancing act that we all must do our best to continually make sense of) i think that it may be jumping to the other extreme to urge anyone & everyone with any/every type of chest pain to head to an ER immediately. i certainly know what & why you gave the recommendation but at the same time think that your definition of "any chest pain" is more specific than what others may be describing as pain in & around the their chest. it is very likely the case that what you classify as "chest pain" of new onset would be cause for a ER trip, on the basis of a number of posts i've read this afternoon & evening i'm pretty certain that some people are using the phrase "chest pain" (or other similar things) to describe a MUCH wider/ broader collection of aches & pains than that which would necessitate immediate/ urgent evaluation & intervention. it's obviously better to be safe than sorry if & when truly concerned or in doubt; i just don't want new folks or those coming across a post by way of search in the future thinking that any new pain that's anywhere close to the chest area merits a trip to the ER. per conversation & an understanding with one's doctor this may very well be the standard for some but on the other hand there are a variety of pains/ discomforts that might occur in & around the chest/ back/ abdomen that, however uncomfortable, are okay to leave until morning (so to speak). i am certainly NOT telling anyone to stay away from an ER if there's an indication or inkling or feeling that it might be a good idea. but having been the recipient of many a PM or email from (often newly or not yet diagnosed) members who are in a panic about a well-intended (and generally in its own right correct) line from a post on the forum i did feel the need to add my own two cents. bottom line: the decision to go to the ER (or not) is ALWAYS an individual decision that only an individual &/or those around him or her can make; the "criteria" may vary greatly from person to person & may even be different for an individual over time but no matter what is never & never should be based on any guideline or suggestion here on the forum (or anywhere else online for that matter...) again i am definitely NOT trying to start an argument; what i AM trying to do is quell any undue panic. cheers, melissa

yep, talking to/ with your PCP to get his or her take would be my first vote as well.....generally speaking. that said, though, i can't recall first hand what your situation is in that realm (aka what your access to &/or relationship with your PCP is like) so don't know if that suggestion makes sense for you? if it's feasible i'd definitely go for having that conversation first.... good luck! melissa

"coat-hanger pain" describes pain/ tension/ pressure in & around the neck & across the shoulders & upper back; picture an actual hanger super-imposed on one's back (hook would be where your head is, hanger then covers neck & upper shoulders & back). sometimes a corresponding headache is considered to be part of the coat-hanger "constellation" of symptoms as well. i'm not sure if what one &/or both of you are describing/ experiencing fits this description? of course individual physiology could account for a bit of variation but more internal &/or centrally or lower localized chest pain wouldn't likely fit under the "coat-hanger pain" description/ heading...not that the particularly terminology is necessarily the most important thing when you're hurting but having seen the coat-hanger terminology several places on the forum as i've been reading today i just wanted to clarify what it is (& isn't). speaking of which....as for what "coat-hanger pain" actually IS, i believe that the prevailing belief/ understanding amongst the autonomic specialists is that its related to orthostatic hypotension &/or a lack of sufficient circulatory perfusion (aka blood flow) in the area of &/or around the discomfort/ pain/ pressure - the head, neck & shoulders - which goes along with why/ how many of us may experience concurrent "brain fog"/ cognitive trouble (or an increased degree of it), though this isn't always the case. for those who do in fact have the classic "coat-hanger pain" laying down or reclining should help the situation...not in a way that it will necessarily stop immediately/ instantaneously- but that if reclined/ laying down it will gradually improve whereas remaining upright often brings with it increasing degrees of the pain/ discomfort. for many (perhaps most?) "typical" meds to treat headaches &/or joint or muscle pain/ discomfort will do little or nothing to help; conversely some do find that meds to increase blood pressure or blood volume &/or facilitate vasoconstriction/ better cerebral perfusion (blood flow to the brain) DO in fact help. i know this is DEFINITELY the case for me; NOTHING helps when i get the "coat-hanger pain" other than laying flat (or reclining darn close to it). essentially it acts as a warning for me that my "upright time" (when seated) is quickly drawing to a close; i don't get it from standing/ walking b/c i can't stay up that long without fainting but during my "better" days/ times with my maximum meds in my system (to up my BP) it's my most prevalent orthostatic symptom from a seated position....almost as if the meds allow me to push & stay seated without actually faintin but eventually my body still konks out halfway - thus the coathanger pain - but still doesn't actually lose consciousness as it would when standing or without meds. in some ways the "coat-hanger pain" almost seems to replace my dizziness/ fainting when SEATED when i'm on my meds. hope this helps, melissa

thanks for letting us know....i've changed the "extra thoughts & prayers" date on my calendar! hope you're hanging in at least halfway okay yourself, melissa

hope it's going well...should be happening right this moment i think?! while hard i'm sure it's great to have the chance to get together with so many who love(d) him to celebrate his life & raise awareness too. kudos to you & your family for getting such a big event together..no small undertaking. cheers, melissa

it's not something i can comment on CURRENTLY (as i can no longer take anything by mouth that doesn't immediately drain back out of my stomach) but back before that was the case i used to drink a good amount of green tea on & off, i.e. it wasn't unusual for me to have it 5 of 7 days on & off, and i never noticed anything one way or the other. interesting theory though, melissa

rene- just wondering how you're doing in terms of managing to eat/ drink as much as you can? and wondering if you've had a gastric emptying test? it's not invasive in any way so there's no reason for your doctor to want to hold off on that one due to your being weak, underweight, etc. and at the risk of sounding harsh, how does your doc think you're going to improve to the point of being stronger & better-able to handle testing if the problem that's keeping you from eating well enough isn't being addressed? i'm not trying to bother YOU; it's just that i'm a bit annoyed with your doctor perhaps ...i've seen too many people be left by the wayside by GI docs who aren't proactive enough. but anyway..... let me/ us know how you're managing if/ when you have a chance. GI-wise i have severe/ total gastroparesis & chronic intestinal pseudo-obstruction - amongst other things - so can relate entirely to not being able to eat or drink no matter how much you might theoretically want to otherwise. that said, i did notice you mentioning tea. since you're having trouble with weight loss (& thus with getting enough calories in) it would be a much better idea to make sure that any & all beverages you drink are full of calories (rather than almost calorie-free as tea is); since you prefer things that are hot things such as hot chocolate, tea or coffee with sugar and full strength milk or cream, or any other drinks that are more full of calories would be great. of course i know that it is sometimes harder to tolerate as much when the drink is richer/ heavier so it's then a bit of a balancing act; try for at least some calories but not too many to keep you from managing as much as you otherwise would. hope you're hanging in okay.... melissa

thanks for sharing. i know that writing - poetry & otherwise - has been a great outlet for me over the years. whether it's something you share with others or something that's "just" for you i encourage you (and anyone else reading this) to keep it up to the extent that your heart desires. melissa

nope....i've never noticed that sort of connection myself (nor heard of it mentioned in any reading or discussion related to neuropathy....be it scientific/ academic/ medical or from patients' reports/ experiences). sorry to not have a "me too" for you! melissa