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Sunfish

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  1. definitely interesting. though based on my familiarity with forum posts (and the folks posting them ) i can guarantee that even within the "same" category/ designation/ choice (on the above poll/ survey) there is still a LOT of variation. NOT something that i'm saying to in any way criticize the poll or its options - i'm impressed that you were able to break things down as well as you did! - but just a reality check from someone research-minded before anyone jumps on the "wow look at how so many of us ______________." in other words, while interesting & not by any means worthless, it would be easy to quickly glance at the results (numbers, percentages, etc.) & make more of them then what they actually say or represent. b/c symptom reporting is so subjective it is very likely that some with far fewer &/or less severe symptoms who are new to living with illness (& thus haven't yet learned to adapt as well as possible) would report their day-to-day symptoms as being far "more severe" than someone with the same symptomology who has learned to live as well as possible with said symptoms & limitations for years on end. and of course the same could be the case (aka that they would report their severity quite differently) even for two (or more) people with the exact same symptom profile, length of illness, etc. solely b/c of the mere fact that we're all going to report our subjectively realities a bit differently. similarly the definition of progression encompasses a vast realm of illness severity as getting worse "slowly but surely" could for one person mean that what used to be occasional symptoms is now some degree of fatigue 24/7 while for another the same REPORT of illness progression could encompass a "slow but sure" deterioration of every system of the body to the point of beginning signs of organ failure. etcetera and so on. i'm sure you get my point. my intent is certainly not to nauseate anyone with statements of the obvious but having witnessed some past polls with folks got overly excited about "findings" to the point of wanting to send "results" to researchers, etc. i just figured i'd get on my soapbox before that happened rather than waiting until after . all that aside, though, it's certainly still interesting - and in my opinion, at least - worthwhile to explore the issues encompassed & raised in this poll. though it may seem hard to believe for any of you who are new to the world of dysautonomia, with all the unknowns that still exist there is actually far more knowledge & understanding now than there was 12 years ago (when i was first diagnosed) and i am confident that someday there will be far more understanding than there is now. certain similarities (&/or differences) reflected in the above poll (amongst other things) may become key in categorizing (&/or diagnosing &/or treating &/or understanding the course of) any number of "sub-sets" of dysautonomia that may or may not fit within our current understanding & categorization of & within NCS, POTS, OI, PAF, etc. melissa
  2. heya em- sorry for the belated reply. to answer your question, though, i would most definitely recommend the book at that low of a price. it's probably not all that helpful if someone is just planning on getting the absolute cheapest thing available in the classifieds; for a more thorough/ detailed endeavor though i think it's still a helpful resource. i know that i used it myself again when i got my second chair - a power chair that reclines (& has footrests that elevate) - and it was just as helpful that time around (if not more so). in fact i'd offer you mine except for the fact that it's a resource i should probably keep on hand...especially after hearing how cheaply you can get your own! but anyhoo... without going into extensive detail i did want to mention a few things related to extra features that some have referred to as helpful (i.e. elevated legrests) as well as the issue of being able to push one's own chair or not. for me i can push myself sometimes and other times not, depending on how far, how i'm doing that day, the surface, etc. i would NEVER be able to do so though if i had a chair that was not as light as the one i have. i mention this only b/c several folks have mentioned renting chairs, buying them quite cheaply from various classified listings, having them delivered without any sort of personalized fitting, etc....all scenarios which definitely mean the chair is a much heavier & bulkier - & cheaper - variety. for those who use the chair only very rarely or for whom finances don't leave any other option this can still be better than nothing but it is quite honestly not at ALL comparable to having an ultra lightweight custom-fitted manual chair. the difference between pushing one's own ultra-lightweight chair that has been custom fitted & pushing anything else (much heavier, not fitted to one's own body, etc) is immense and could easily make a difference in whether one could push one's own chair. not to mention that for heavier use & longer distances pushing a chair that isn't custom fitted to some degree can actually cause major ortho issues. bottom line is that i just want to stress that the "do you push your own chair" question isn't one whose answers can be judged fairly side by side as it sounds like few people have ultra-lightweights. while i certainly can't push myself many times regardless and am sure the same is the case for others at times, i would almost guarantee that those who haven't tried a custom fitted ultra lightweight model would be able to push themselves more in that than in what they have currently. along the same lines, the issue of a chair's weight & size - and the HUGE impact this has on potential independent use of the chair, if only at times - comes into play in relation to various features that initially sound appealing as well. for instance i definitely thought that i wanted elevated leg rests but then learned that they are not an option on ANY ultralightweight chairs; as such, after much deliberation i scrapped that option in order to go with a chair that was more than 10 pounds lighter than the next lightest option as i knew that the lighter chair would increase my potential to push/ use/ transport the chair myself (at times) GREATLY and knew (from in-store & in-hospital use in the years preceding getting my own chair) that i could always "elevate" my feet/ legs simply by crossing them in my lap ("indian style" in non-politically correct terminology). i do have elevating legrests on my since-acquired power chair but in all honesty have taken them off in favor of crossing my legs with that chair just as often as i have used them (b/c of the fact that they make the chair so much wider/longer, even when not elevated, & thus harder to maneuver & fit in small places). another feature that is theoretically appealing to me (& likely to many who might be reading her) - a reclining back - is another that simply isn't an option for any of the lightweight/ ultra-lightweight chairs. during a period wherein i literally couldn't sit up for more than a few minutes (aka under 10 or so) i had a manual reclining chair that i was lucky enough to be able to borrow from a local agency; it was great for what it was but it was VERY bulky & awkward & not something that i could move even a few inches on my best day (even if my life depended on it!). conversely, while my chair could have been even a tad bit lighter still my having a lower back & no handles that would have never been an option for me b/c i need to be able to be pushed when i'm not well enough to do so myself, not to mention that the bit of extra back support is probably better for me when i'm not doing as well. so....bottom line - more so than any mention of a particular feature or item - is that it's important to take ALL things into consideration in relation to what will be most likely to make one's chair the most user-friendly day-to-day, something that may require a bit of prioritizing (and perhaps deviation from one's original plans/ thoughts). there's simply no such thing as a chair that has all the features AND is lightweight & easy to transport; if one were a millionaire (anyone?! do tell!) i suppose i might suggest multiple chairs with difference features/ utilities but in the real world it's important to really consider what's MOST important & go from there. b/c all features in the world won't be all that helpful if you (& your family & friends) can't get the chair anywhere you want or need to go. (trust me on this one; while my manual chair is ultra-portable my power chair has been horribly not-so-good in this realm meaning i can hardly use it even if/ when i need or want to ) good luck to any & all going through the process. (and feel free to track me down with any other questions. i think i'm one of the few folks on the board who - for better or for worse - has (or has had in the past) as many types of chairs as i've had (ultra-lightweight manual, reclining manual w/ elevated legrests, power chair w/ reclining back & elevating legrests, etc.). hope this helps, melissa
  3. hi rob - and welcome (back) to the forum. i'm one of the few still here from when you were here years back though there are a few others as well (and others who read &/or stop in to say hello now & again). not sure whether or not i was all that active when you were here previously as i may have been only reading/ lurking at that point but nonetheless i at least recognized your name. and of course you are MORE than welcome to jump back in as a more active poster; while we're all glad to welcome you i'll hazard a guess that the fewer-in-number males among us might be particularly glad to add another to their ranks. but moving on.... i unfortunately can't help you out all that much with your specific questions but will reiterate katja's succinct statement re: meds, specifically re: having "zero side effects to meds many other people can't tolerate, horrible side effects to meds everyone is typically able to tolerate, and paradoxical side effects to meds infamous for causing the opposite of what I experienced." she put it better than i could replicate & it's something that i've found to hold true not so much or only for myself but perhaps more importantly as a maxim for those with dysautonomia in general. to put it even more shortly: we don't always follow the "rules"....something you seem to have certainly found to hold true for yourself as well. while i have been around the world of autonomic dysfunction for quite a few years & have tried many of the meds i actually don't have experience with most of the meds mentioned in your post, likely due to the fact that - as someone with autonomic failure - my body tends toward the extreme "hypo" in many of the exact realms that your body tends toward the "hyper". all in all, however, there are a LOT of forum members with hyperadrenergic POTS &/or some degree of hyper-activity as far as their autonomic nervous systems are concerned so you shouldn't have trouble finding others to converse with who have at least some of the same issues physically. all of that said, though, i did take celexa several years back and must say that discontinuing it was NOT easy in the least. i am saying this without having had any experience with other similar meds as the only other med i've taken in the classes being discussed is the very-similar-to-celexa lexapro (which my body pretty much didn't distinguish as any different.) nonetheless, when i was on celexa/ lexapro i was unfortunately never told that there was any need to taper (& wasn't as well-educated myself so didn't bother to ask); as such, when i had to discontinue it for participation in a research trial i stopped it cold turkey & it was HORRIBLE. at the time i didn't know what was happening right away b/c i was stopping other meds simultaneously so blamed how ill i was on simply "being off my meds" but in hindsight - and with the cumulative knowledge & experience born of taking (& having to discontinue) all of the other meds involved on multiple occasions in the years since - i know for certain that a good deal of what i was dealing with was classic SSRI withdrawal. and to say that it was unpleasant is an understatement. so....while i can't comment on it - it being the discontinuation of celexa - in comparison to other SSRIs &/or other typical &/or atypical antipsychotics in that i honestly have no idea whether its easier or harder, i CAN attest to the fact that it is NOT a medication that should be stopped cold-turkey b/c it very much does merit a cautious discontinuation in order to prevent or at least minimize a withdrawal that is not an experience i would wish on anyone. other than the issue of discontinuation/ withdrawal though i never had much trouble with celexa or lexapro. (i again speak of them together b/c my body pretty much experienced them as one and the same.) when i first started it/ them &/or increased my dose i occasionally had a bit of nausea in the mornings for a few days but it was self-limited & never severe, aka it always stopped within several days & even when happening didn't limit my ability to eat &/or function as much &/or as fully as otherwise possible. in all honesty though i'm not entirely sure how helpful it ever was for me physically. at times i think it might have helped some of my GI issues &/or my fatigue. and while i originally started it to help with autonomic issues/ symptoms at one point we increased my dose i hopes that it would help some with a period of (much) more-than-situational depression i was dealing with; since the depression abated & hasn't returned i can't really say whether the med was helpful or not. in the end i never went back on it after having to stop it for the clinical research study almost 5 years ago...not b/c of any problem it caused but more so b/c of the unknowns (in my experience) relative to whether it ever really helped. all in all though i am a big fan of trying anything that has a chance of helping and jump at the opportunity to do so whenever reasonably possible. i can't tell you how many times i am surprised at - & somewhat saddened by - folks here on the forum who repeatedly complain of how (understandably) miserable they are symptomatically but yet refuse to try A, B or C b/c they are too afraid of what "might" happen. in saying this i am NOT in any way trying to comment on or otherwise judge cautious decision making re: treatments & medications; it's not particularly wise to jump on every next "cure" offered by every tom, ****, & harry either and i am the last one to advocate being a patient who isn't educated &/or involved with &/or in his or her own treatment & health. but there are some who don't & won't try ANYTHING b/c of all the "what ifs" and it just saddens me b/c of how many people i have seen achieve pretty darn good control of symptoms, and thus a pretty high level of health, after finding - sometimes only after quite a bit of trial & error - the right combo of meds &/or other treatment options. but i digress. not sure what got me going on that tangent as it certainly wasn't directed specifically at you &/or any of your specific questions. i'll leave it here just in case someone reading needs to hear it but do NOT take it too personally as i certainly had no intention of giving you any sort of lecture. sorry about that! i do want to encourage you to keep pressing to hopefully find a med/ treatment combo that perhaps works a bit better for you than the balancing act you're currently trying to work with. there is definitely something to the fact that many folks with dysautonomia do better taking smaller doses of more than one med than a higher dose of any one med, and that in many cases the two meds may involve what is at least partially a push-pull &/or balancing act of some type similar to your description of the the serotonin balancing act you (& your meds) may be trying to achieve. but the way in which you are stopping & starting some of your meds is something that may be hurting more than helping you physiologically in the long run. on one hand i commend you for the amount of effort you're currently putting into trying to control your symptoms as much as possible; the delicate back & forth you describe is testament to how much you're willing to put toward trying to feel better. and yet - as others have mentioned - i can't help but think that there's some combo out there that could give you at least a bit better stability than what you have at the moment; while dysautonomia is in many ways known for its ups & downs & its lack of stability/ continuity, some of the meds that you mention starting & stopping simply aren't intended to be taken in that way and, as such, i can't help but think that they may be contributing to your difficulties at least as much as - if not more than - they might be helping. i don't at all doubt the way you've figured out their starts & stops & the corresponding effect(s) on your signs & symptoms that you've experienced but some of the meds may be contributing less obvious effects that are more long-acting & which may be adding to the continuous back & forth cycle that you're doing your best to balance. bottom line - and lots of ramblings later - to say that i hope and firmly believe that if you keep searching & pushing & trying you'll find a combo that's works at least a bit better for you moving forward. not necessarily some magic pill &/or mix that has you in perfect health (though i'm sure you'd take that too!) but something that at least offers a bit less of the back & forth balancing act. speaking of which do you have a decent doc that you're working with? one that is knowledgeable about or at least familiar with autonomic dysfunction? or barring that someone who is open & willing to learn? obviously you've had to have received a dx as well as meds from someone along the way but just wondering what degree of physician partnership & expertise you're currently working with? along the lines of meds you have or have not already tried or considered, have you tried anything to specifically or directly address any of your GI issues? SSRIs have certainly helped others with GI issues but this doesn't generally involve having to start &/or stop them repeatedly. for better or worse i am very well acquainted with the world of GI motility meds so feel free to let me know if you have any questions in that realm. i hope that the celexa info at least was/ is perhaps a bit helpful, though only in combination with info from others & elsewhere. and i hope that you do receive some helpful feedback from others as well. okay...shutting up for the night. not sure how what i thought would be a short post turned into one of my books but certainly isn't the first time.... cheers, melissa
  4. jennifer - you're definitely lucky to have your own personal pharmacist.....i can think of more than one time over the years when i could have used my own! that said, though, i'm confused by your second post & am wondering if there might be an accidental typo? what i'm wondering about is the statement you have bolded, specifically that "Zantac could increase the effect of Midodrine by 20%, causing supine hypotension and OI if you get up too suddenly." the first part, specifically that "Zantac could increase the effect of midodrine by 20%" is exactly what cat lady was asking about; the second half of the statement, however, is what i'm questioning b/c it's essentially stating that extra midodrine will have an effect OPPOSITE to what midodrine's effect generally is (rather than accentuating or increasing it's characteristic effect(s). i'm not sure if i'm being clear or making much sense, but an "increased effect of midodrine" would by its very nature have the potential of causing supine HYPERtension rather than hypotension. and since the underlying mechanism of midodrine is designed to treat orthostatic hypotension, it doesn't follow that an increased effect would have any potential of causing OI/ OH; it would be a DEcrease in the effect of midodrine that would have the potential of causing OI rather than an INcreaserather contradictory. just trying to keep the original poster - as well as any others who might be reading now or in the future - from more confusion &/or undue concern. b/c in order to hold true to anyone's basic understanding of midodrine the bold statement either (1) has a typo or (2) begs a good deal of additional explanation (to how a - potentially - heightened effect of midodrine causes it to do the exact opposite of what it's designed for in the first place.) thanks! melissa
  5. it's not really a choice for me. i cannot GET out of med until i have not only taken my midodrine but until it has actually "kicked it" (aka taken effect). the time on the clock has no bearing for me. and my understanding - as well as what has been passed on to me from several docs over the years - is that the recommended 8am first dose is only designed as a representation of when many might wake up, get up, start their day, etc. when i was able to work i used to actually set two alarms 30 minutes apart; the first was to take my meds - most importantly midodrine - while the second was to actually get up in case i had fallen back asleep in the interim, though many times the midodrine "kicking in" would itself help me to wake up that second time (combined with the fact that i obviously couldn't be sleeping deeply at that point). i attempt the same thing now (the double alarms) if/ when i'm trying to get up for mid-day church, an appointment, &/or a "goal wake-up/ get-up time", but it's not all that successful these days. but i digress. there have actually been more than a few discussions re: midodrine on the forum, several of which have been very recent (i.e. within the past week or so); for more detailed replies re: the "don't sleep/ lay flat right after taking" precaution, other people's dosing schedules & doses, & more i would HIGHLY recommend doing a search for midodrine. you'll get more info than you'll know what to do with. to get you started, however, i know there is some discussion here: http://dinet.ipbhost.com/index.php?showtopic=11838&st=15. the post's title does not suggest that it necessarily contains a lot of discussion re: midodrine but i promise you that it's there. while i'm not the only one who chimed in, i know that my LONG reply (including a lot of commentary re: the timing of midodrine doses) is in the middle of the second page of the post. definitely take the time to check it out. hope this helps, melissa
  6. while it's always a good idea to pay attention to possible interactions between meds - particularly when multiple docs are involved in prescribing - i genuinely don't think you need to be worried about this one. normally i would simply tell you to not worry too much but to run it by your doctor just to make sure, ease your mind, etc. since your doc is already on board i'm going to pretty much agree with him/ her but will try to explain my rationale a bit better. technical pharmacology jargon aside, the bottom line of the interaction warning is that taking both meds together presents the possibility that the person taking them will get "more" of one (or both). while the actual potential interaction is far more complex, the end result would be the practical equivalent of taking a higher dose of the med(s). for some meds this possibility would be something that would necessitate a lot more caution and - in some cases - might involve monitoring bloodwork. in your case, however - or perhaps more correctly in the case of the meds you're taking - you don't need to worry about anything that complex. since "excessive effects" of any med is simply fancier lingo for more, or too much, as far as the midodrine is concerned you need only to be concerned with making sure that your blood pressure doesn't get too high....something you theoretically would/ should be doing anyway if you're on midodrine. there's no way that you could have "excessive effects" of midodrine in your bloodstream (or anywhere else in your body) which would not also act to raise your blood pressure, so in short you really don't need to worry about the midodrine side of the occasion at all b/c any concern/ monitoring would be no different than what you & your doctor would/ should already be paying attention to (in terms to how well the midodrine is working for you). per the interaction warning, there is a theoretical chance that you need a bit less midodrine since (& because) you're also taking the zantac/ ranitidine than you otherwise might; in reality this may or may not be the case. in regard to the zantac, while it doesn't have a hallmark effect that is as obvious, quantifiable, &/or easy to measure (compared to midodrine's effect on blood pressure), it's a drug that is relatively benign in nature & effect so that the possibility that you might be getting "excessive effects" from it - what would be the equivalent of your taking a bit more than what you're technically prescribed & taking - is not anything to be concerned with. without knowing your dose i can all but guarantee that it can be prescribed in doses higher than what you're taking, and generally speaking meds used for heartburn/ reflux aren't dose-adjusted to a high degree of specificity; in other words docs will generally start with a lower dose but not hesitate to jump to twice that if & when necessary with little or no concern of prescribing a dose that's a bit of an overshoot. while all meds should obviously be used & handled properly & none should be dismissed as entirely safe or benign across the board - after all they are all meds, and not sugar pills - the reality is that some do require more diligence as well as a higher specificity when it comes to dosing. in terms of their effect on the symptoms they are intended to treat (as well as the rest of the body), the exact dose of midodrine, for instance, is somewhat more important than the exact dose of zantac; this does NOT mean that zantac is without an upper limit of safety, nor that taking more that what one needs of a med is ever a good idea, but taking a bit more zantac than needed to combat one's heartburn is not a problematic as taking too much midodrine (& thus causing hypertension). so....if you are getting a bit of "excess effect" from your zantac, there is again the chance that you're benefiting & would otherwise need a higher dose or a stronger med; but if this isn't the case & you're instead simply getting what comes down to a bit of extra zantac (relative to your symptomatic needs), it's not something you should be worried about. while i could probably do some editing in favor of a more concise explanation, hopefully my ramblings will at least explain things well enough to put you more at ease. and help you understand the rationale/ reasoning that's behind what may have felt like lack-of-concern from your doc. let me know if you have any questions. hope this helps, melissa p.s. for what it's worth i have taken both meds simultaneously myself at times in the past. the only reason i don't still is that i require something stronger than zantac to combat the degree of reflux i get with my gastroparesis.
  7. if you haven't already seen it, the page on dinet's main site re: diagnosis (aka "detection") lists as well as explains any of the tests that have been mentioned (plus more). while the page is entitled "how is pots detected" & thus seems to be specific to POTS, in reality most, if not all, of the information related to testing/ evaluation itself (as opposed to test results) is applicable for dysautonomia in general. the direct link is: http://www.dinet.org/how_is_pots_detected.htm in any discussion related to diagnosing dysautonomia it's also key to recognize & include the importance of clinical signs & symptoms. a relevant & thorough clinical history & exam allowing for proper consideration of relevant signs & symptoms by a clinician familiar with autonomic dysfunction is in many cases just as important as any testing (& in some cases may even be more so). obviously testing can important but it is far more relevant & useful when combined with clinical evaluation. as others have mentioned a tilt table test (TTT) is often considered the "go to" test for dysautonomia or, more specifically, the orthostatic intolerance that is front & center to many types of autonomic dysfunction. for many with POTS, NCS, &/or other variants of dysautonomia wherein orthostatic intolerance & related issues is the prevailing problem the TTT - combined with evaluation of clinical signs & symptoms - is often the only dysautonomia-specific testing needed. additional tests can be helpful in some cases & can help flush out the extent &/or mechanism of autonomic dysfunction throughout the body, may at times provide clues toward the best treatment(s), &/or can simply provide information & reassurance in the form of exclusion (aka confirming that a particular thing is not a concern). but more is not always better; for some people (& their accompanying clinical profiles) an abundance of testing will show little more than what was shown on the TTT. hope this helps, melissa p.s. i was originally diagnosed - with NCS - with "just" a TTT. over the years the extent of my illness progression - in addition to my participation in several clinical trials - has led to my having most all of the dysautonomia-specific tests as well as a wide array of other more system-specific tests that can be part of autonomic dysfunction (i.e. tests for GI function/motility).
  8. to the mightiest mouse i know - sorry that my reply is so delayed...you've been in my thoughts & prayers regularly since i read your initial post (as is your father & any others in the family) & i very genuinely thought that i HAD replied. apparently i didn't press something correctly though, eh? grrr. other than extending a virtual basket stock full of good thoughts, prayers, tissues, strength (to endure & to push when you need to), peace & calm (to allow for rest when you're able), extra energies (more than you "should" have), plentiful patience, weekends that feel longer than they actually are, & whatever else you might need, my "post" wasn't anything that varied from the sentiments posted by many others. i just wish that my basket could also include some tangibles to help with cooking & cleaning & the like. quite honestly though words, sentiments, & tangibles all seem rather insufficient in light of all you're dealing with at the moment. when relationships & histories are "complicated," things like illness - which are always tough - are often even tougher. try to take care of yourself the best you can, hang in there as well as you can, & when all else fails opt for some kitty therapy from wilbur & moja? by no means trying to make light of all that's on your plate but from one kitty-lover to another i can attest to the fact that some kitty cuddles &/or antics can, at the very least, be a nice diversion when so much seems to be (&/or actually is) falling in around you. SO glad to hear that at least your boss is being understanding; obviously doesn't make anything else go away or get "better", but perhaps one of those "diamonds in the litterbox" that can & will help as you're muddling through. love, hugs, smiles, sunshine, prayers, fairy dust, & anything else your heart's desiring, melissa & czar (who wants kitty kisses & cuddles added to the list!)
  9. poohbear, michelle, et al - re: the use of florinef & midodrine together, i know of at least 5 of the top autonomic specialists who regularly prescribe the two meds together. the pdr warning is solely based on the fact that both meds can (& generally will) raise blood pressure; while this is obviously something that should be monitored so that it doesn't get out-of-hand, dangerous, etc., those who are being prescribed both meds by the autonomic docs are often in NEED of this duplicate/ double effect, so to speak (aka concurrent but different approaches/ methods to raising BP). i took both meds myself for years. that said, i am a big proponent of adjusting meds (whether starting, stopping, or changing dosing in any way) one at a time b/c - as pooh mentioned - this makes it much easier to have some idea what is doing what (be it something good or bad). that said, during acute flare-ups - hospitalizations certainly qualifying under this category - many things are often done at once, at which point you must simply do your best to sort things out from what you're working with. i remember years & years ago - at my first appt with dr. grubb in fact - that he specifically wanted me to start on two things right then & there b/c of the degree to which i was "crashed". in the more than 11 years since then we've always taken the "one at a time" approach (barring of course life-threatening hospitalizations) but i guess i just wanted to throw out the fact that, while "one at a time" is generally best, there are occasions when the health situation might warrant a more heavy-handed approach. i realize that everyone would know this in extreme/ life-threatening situations so don't mean to insult by implying than anyone wouldn't know that much!!! more relevantly perhaps was/ is my mentioning an office setting wherein an autonomic doc - who usually is big on "one at a time" - specifically wanted me to start two meds at once (which, perhaps coincidentally, also happened to be florinef & midodrine...way nack then!) that said, it is still probably a great idea to try to make only one change at time moving forward, i.e. changes in dosing & the like. hope this helps, melissa p.s. since it's only been via your hubby until now, let me offer a welcome directly to you as well! keep on keeping on & hang in the best you can in the mean time.
  10. while i am obviously not a doctor or pharmacist or any other type of medical professional, having been around the world of dysautonomia for years - including pretty extensive conversation with some of the most highly regarded specialists (docs), a cumulatively large amount of reading (medical research/ articles), & reading just about every post here on the forum for years (as well as some assorted reading of & interaction with patients elsewhere) - for me the "florinef red flag" so to speak goes up whenever the daily cumulative dose is more than .4mg &/or whenever the starting daily cumulative dose is higher than .2mg. (by "daily cumulative dose" i'm only referring to the fact that my "red flags" don't concern whether the dose is taken all at once or split throughout the day into 2 or more doses.) while florinef can certainly have its issues, & while i do agree somewhat with what someone else said (tearose perhaps?) re: it being a bit tougher to adjust &/or figure out the correct dose b/c of its much longer half-life (relative to midodrine), i am also bothered when people tag any drug as seemingly taboo - or "worse than" - almost any & all other options as this sort of approach can unnecessarily scare people away from a treatment that might otherwise help them immensely. (julie: i am NOT at all implying that your post was or is doing this in any way....not at all!) along those lines it sort of saddens me to hear how amber was not only scared away from trying florinef but that the mere fact it was prescribed in an entirely proper & reasonable way (barring any specific indication to the contrary that hasn't been shared here in her post) hindered the level of trust she had in a physician. (amber, if you're reading.....i'm sorry that you read info that led you to feel that way. unless i'm missing something the dose you were prescribed was not unreasonable nor any different than what is prescribed by at least some of the top autonomic specialists. if you have any questions don't hesitate to ask away!) no medication is going to work for everyone, some do have more chance of complication(s) than others &/or require extra monitoring, etc. but i also know of a good number of individuals - both anecdotally & by way of quantifiable research trials - who have found florinef to be extremely helpful, either alone or in combination with other meds, and a key component in bringing about better health & functioning. getting back to the more specific dosing question raised here, though, i am, a huge proponent of the reality that every individual is unique. this certainly includes individual's metabolism & response to medications. but there are limits to that variance & guidelines that are there for a reason. at the very least as a starting point. and the point re: florinef - or any drug w/ a longer half life - taking longer not only to bring any hoped for benefit but also any potential problem (aka problems may take awhile before they become apparent) is well taken. as is the continuation of that point, i.e. any effect - good or bad - will take time to leave/ subside as well. these reasons & my knowledge re: the use of florinef both in clinical practice (by several of the top autonomic specialists) as well as in past research/ clinical studies (related to dysautonomia only) are how i came up with my own "red flag" doses. by no means are the numbers i put forth an exact science but i do think they have some merit, i.e. i didn't just pull them out of thin air. of course i don't mean that anything less than the numbers i offer is or should be okay or appropriate for any/ everyone. that said, at the risk of overstepping my bounds as a non-doctor, i do have some concern with doses such as the 1mg daily dose mentioned recently. re: the possibility that it was a typo i actually asked specifically (within the discussion of the post/ topic) & it was NOT a typo but in fact the actual dose as re-clarified from the poster, who himself reclarified at the doctor's office. while that assures me that it's not a mistake on the part of the patient i would be lying if if didn't acknowledge that i'm still a bit doubtful of that sort of dosing. not much more to say or do though. the highest dose i was ever on - via dr. grubb for what its worth - was .3mg daily (split into .2 & .1mg doses though i can't recall if there was a particular order. whether is helped me was somewhat debatable - it may have for awhile in combination with midodrine & other meds - and the only problem i had with it was depleted potassium that necessitated monitoring & supplementation; nothing that couldn't have been managed had it been helpful enough but good enough reason to stop it since the benefit was minimal or perhaps short-lived. hope this helps (and doesn't just confuse & confuddle!) melissa
  11. sorry you're hurting. i don't have any experience with it personally, but you may want to read up on "Plantar Fasciitis" & see if it sounds like what you're dealing with. you can search for it online & come up with more info that you would know what to do with, but here's one of the reliable links: http://www.mayoclinic.com/health/plantar-fasciitis/DS00508 don't let more extreme stories/ examples/ treatments scare you; even if & when it is valid info those are the most extreme of the extreme situations. most people find relief via rest, other lifestyle changes (i.e. being careful about which shoes to wear), & at times a short course of meds (either OTC or Rx). if this does sound like it's what you might be dealing with & it doesn't go away within a few days, it probably wouldn't hurt to touch base with your doctor...not in an emergent way but whenever it's convenient for you. good luck! melissa
  12. glad to hear that the appointment went well. from the few things you've shared it certainly sounds that the doc "gets it". from personal experience as well as based on that of others' over the years i will tell you honestly that one of the most valuable things in short and long term management is having a reasonable degree of access to a doctor who largely "gets it", i.e. s/he is familiar with the bigger dysautonomia physicians &/or research centers, is open to trying different things, knows there is no magic answer, etc.. it sounds like the doc you saw today has a good chance of being this person - the only reason i'm saying it's still a maybe being that you'll need more time to know for sure - and while you do seem to realize already that this is a good thing i can tell you that it is, sadly, a rarity. while there are certainly some of us who have been lucky (not with all doctors, but with at least some &/or one), there are literally some people who have lived years or even decades without being able to connect with a local doc willing to manage long-term treatment/ management. some of these people may travel to a "top spot" for diagnosis, treatment recommendations, etc., which can obviously be helpful, not to mention immensely validating for those who have previously been dismissed, but when it gets down to day to day management month after month & - in many cases - year after year, the reality is that many of the "top spot" docs are simply not set up to or able to manage patients long-distance &/or long-term. all of which is to say that, once some level of diagnosis is established (aka many people don't need every single available test that some bigger centers might offer) - and to a degree even more important than an "official" diagnosis - having a local "go to" doc is truly the MOST important & invaluable asset in treating & managing any type of chronic autonomic dysfunction. whether it's a specialist who is accessible (aka not someone who has a 6mth waiting list) or a primary care doctor willing to learn matters far less than the attitude, openness, etc. of the doctor. and at least initially it sounds as if you have someone who very possibly may fit the bill. re: the option of seeing the doc that's closer to you, that is obviously more convenient & particularly if & when appointments will be happening every other week it will certainly make things much easier. if it doesn't work out though &/or if you find that you much prefer the doc you saw today it may be worth appreciating that there are a LOT of people on the board that would probably give their first born child - not really of course, but you get my point - in order to have a decent doctor who "get it" who is "only" an hour away. i am NOT minimizing the hassle of an hour drive but only trying to highlight how tough it can be to find a good doc who "gets it" enough to be worthwhile re: treatment strategizing but is also accessible. but enough rambling about that....i'm sure you get my point. and by no means am i discouraging you from trying the local option; hopefully that doc will be just as great when connected with communication with the other one. heck you may have some forum members moving your way to steal the docs you've found! re: the treatment changes michelle's going to be trying they sound fairly reasonable, though i'm guessing the new florinef dose is .1 instead of the 1mg you typed? it's a dose that gets mistyped VERY often here on the forum:-). re: the midodrine, hearing your report that she feels a lot worse after about 3.5 hours - what i call "crashing" for myself - is actually a good thing in that it does indicate that it's helping at least a bit, even if not enough yet to make her feel "better" (rather than just a little less horrible). i will be honest that i have never heard of anyone taking midodrine every 2 hours on a regular basis; i've only heard of 2hrs being used in regard to needing to take more than what was already taken, i.e. if the initial dose wasn't high enough, b/c in reality - and seemingly in line with what michelle has already experienced - the initial dose will still be in her system after 2 hours. it may be that the doc is using that option though to help figure out which dose is best b/c if she's taken, say 5mg, at 10am & then takes another 5mg 2 hrs later & feels the best she does all day an hour after that, in reality she will have had 10mg in her system at that time which would show that dose as something that might in fact be ideal. i am certainly not trying to second guess &/or supersede anything you were told by the doctor you saw as it sounds like he is familiar with midodrine. just be aware that any dose she takes will generally "kick in" approximately 30 minutes (give or take) after she takes it - many of us can literally feel exactly when it takes effect - and then will likely be in her system for 3 to 5 hours, the time which may increase along with an increase in dose (something that commonly happens with many meds, i.e. even though the med technically lasts the same length of time at any dose, higher doses tend to last a bit longer than the lower dose). for this reason it may be that when she switches to the 5mg she doesn't "crash" until 4hrs rather than the previous 3.5; this isn't for certain though & it may be that the 3.5hrs remains constant so essentially no need to be surprised either way! re: dose timing, since it takes about 30 min for midodrine to take effect the goal is to take the next dose before the previous dose is able to wear off, i.e. if someone consistently notices a dose wearing off at 3.5 hours then it would make sense to time a second dose at 3 hrs after any previous dose, if the wearing off happens around 4.5 hours then the second dose would best be taken around 4hrs after the previous dose, etc..obviously none if this is an exact science, it varies a bit from person to person, & even in one person it can sometimes change over time, but hopefully some of the extra details may help you both a bit as you're trying to figure out what timing works best. ramblings over...at least for the night. congrats on a productive appointment & good luck in the days to come. hopefully you'll notice positive changes soon but remember that they make take time so don't get too discouraged....it certainly sounds that- with the meds & the doctor(s) you're working with - you're headed in the right direction. melissa
  13. sorry to hear that things aren't going better, but honestly not all that surprised. just quickly i do want to emphasize that michele's current dose of midodrine is really very small. so before dismissing the med it would make sense to at least consider higher doses. by no means is it a guarantee & it doesn't work for nor agree with everyone, but i would hate for it to be something that you cross off without have really given it a chance! good luck at the appointment! and hang in there (both of you....knowing that it's easier said than done!!!) melissa
  14. (introductory disclaimer: while i am generally a bit of a perfectionist & perhaps a bit of a snob when it comes to grammar, writing, spelling, etc. - particularly my own - i am fully aware of the fact that i have absolutely NO grasp of the proper use of all forms of the words lay, lie, laying, lying, etc. for no lack of trying i have never really "gotten it" and can guarantee that tonight isn't about to be my "aha moment", so since the words can't be avoided in the post that follows just know that i know i'm clueless. and if anyone reading has their own involuntarily grammar/ writing/ spelling perfectionism/ snobbery gene that isn't defunct of the ability to properly utilize & understand the forms of lay, lie, & friends, accept my apology for butchering their usage!) but moving on to the actual topic/ post/ question(s) at hand.... ricky &/or michele et al - welcome home! hopefully it's allowing both of you to at least get a bit better rest! while i realize that things never seem to move fast enough when it comes to wanting better health for ourselves or those we care most about, for what it's worth you seem to be at least heading in the right direction re: trying (& retrying) reasonable treatments, not jumping "easy fixes" (that are often anything but), trying to do your own research/ education to be a better advocate, etc. so while i know it's often easier said than done, try to hang in there the best you can in the midst of pushing for the best possible doctor(s), treatment option(s), symptom management, etc. others have chimed in with a lot of good thoughts & advice & some of your initial questions/ issues have been resolved at this point - or at least put on the back burner - so i'll stick to your most pressing question that, unlike many things in the world of dysautonomia, has a relatively direct & quantifiable answer. so....regarding the question of when midodrine can be taken in relation to lying down, the official/ textbook answer is 4hrs. in reality though - as with many things - the "official/ textbook" answer is more of a guideline than an absolute; the 4 hour guideline is based on the pharmacology & half-life of the drug (aka how long its effect lasts once taken) in a lab setting as well as it's "performance" in clinical trials. in case you don't already have a clear understanding of the reasoning behind the 4 hr guideline, its premise is based on the fact that the primary intention & desired purpose of midodrine - to treat blood pressure that is too low when upright (sitting &/or standing) by vasoconstricting the blood vessels - can, in SOME people, cause hypertension (high blood pressure) when NOT upright (aka lying down); this is technically referred to as "supine hypertension". the guideline to not lay down or go to sleep (which has nothing to do with sleep itself but refers to the reasonable presumption that for most people going to sleep involves laying down ) for 4 hours after one's last dose of midodrine is thus based SOLELY on this possibility/ risk of hypertension upon lying down. while it is true that the prescribing guidelines state the 4 hour guideline as an absolute, and while - as you have already experienced yourselves in the hospital - some nurses, doctors, pharmacists, etc will treat the guideline as if it is written in stone, make a stink about it to the extent that one would think it is a matter of life & death for all involved, etc., in reality the "don't lay down" guideline is not nearly as absolute. this is not to say that it should be ignored, but with a good understanding of why the guideline/ warning exists people can generally figure out how relevant & important the guideline/ warning is for their own body & situation and act accordingly. clear as mud??? stick with me.... by understanding one's own body & the affect midodrine has on one's blood pressure in different positions (standing, sitting, & supine/ laying down), as well as (ideally) discussion with one's doctor(s), many of those taking midodrine have learned how to adjust the timing of their doses to maximize it's helpfulness in treating/ managing symptoms, something that may or may not include needing to heed the 4 hr warning. in relation to the prohibition on laying down after taking midodrine what essentially matters is making sure that one's blood pressure doesn't get too high when laying down, something that - despite the possibility/ warning - doesn't actually happen for many of us with dysautonomia. as such, with the approval &/or recommendation of their doctor(s), people whose blood pressure consistently does NOT get too high if &/or when they lay down after a dose of midodrine (aka within 4 hours) can generally disregard the guideline, some people have blood pressures that are consistently or intermittently so low while lying down that their doctors have actually prescribed/ told them to take doses of midodrine around the clock regardless of any naps, resting, sleeping, etc, etc. while it's best to discuss any medication questions - including the issue of taking midodrine before lying down - with michele's own doctor(s), generally speaking the important thing to figure out is how her blood pressure reacts to the midodrine, both in general & if she lays down soon after taking a dose. if you have a reliable blood pressure monitor at home - something that would probably be a worthwhile investment if you don't - you can gather some blood pressure readings (as well as heart rates) in different positions both with & without the midodrine as this can only help moving forward in terms of figuring out the best dose, how well it may be working, etc. if you do have a monitor handy it's not unreasonable to try laying down to see how the blood pressure reacts; if after lying down for a few minutes the pressure is notably high then obviously you wouldn't want to STAY laying down for extended periods with the midodrine on board. re: your question about hwo much midodrine michele is currently taking and how much others may take, it's of course always important to keep in mind that we're all different, both in terms of our underlying illness & related blood pressure issues AND in regard to how our bodies respond to a medication. the degree with that said, however, it may be worth noting that michele's current dose of 2.5mg is quite small. there are certainly some people who are helped by this dose (or less commonly have side effects of some sort on this dose that would preclude trying a higher dose), and it is hardly ever a bad idea to start on a small dose & work up as indicated. if the current dose doesn't seem to offer much help though - or even any help at all - it's worth noting that doses up to 10mg per dose are commonly needed & used, with even higher doses (i.e. 15+mg) being employed in some more unique cases. some people take a bit higher amount for the first dose of the day, some learn to adjust the size &/or timing of doses based on changing signs & symptoms (including blood pressure), some take midodrine only intermittently/ as needed, some find they need to take their first daily dose while in bed & wait for it to "kick in" (something that most people can feel when on an effective dose) before getting up, etc. {personally i've used a wide range of midodrine doses since first taking it over 11 years ago & have been on some measure/ dose of it for all but approx. 8-10 months of that time. way back when i initially started on 5mg, every 4hrs during the day (i think); i currently take 10-15mg (depending on how i'm feeling & where my blood pressure is) every 4-5 hours when awake, including if/ when i'm laying down, ready for bed, awake in the middle of the night & need to get up to the bathroom, etc. while i certainly need it now to a greater degree day & night than i did years ago, with the exception of a few odd months when i had frequent hypertension even without the midodrine i have NEVER in all 11 years had trouble with the midodrine causing me to have supine hypertension (aka high blood pressure when lying down) and as such have never been someone that has had to heed &/or otherwise concern myself with the "don't lay down" warning. regarding the timing/ scheduling of doses - whatever the quantity - michele's current schedule of every 4 hours during the day is the most common dosing schedule & definitely a logical place to start (& where many, if not most, stay). conversely, while it's now a non-issue, the initial dosing schedule you mentioned from the hospital did not make any sense & - as someone who is pretty aware of dosing schedule alterations that may be employed in some situations - i can't fathom any scenario to explain why that sort of schedule would have been designed and, as such, can only assume that it was an error. the evening florinef dosing would have had no bearing on the midodrine schedule & would have been no reason for the "no laying down!" mandate to be extended to an unreasonable 8 hours. there's no need to worry about craziness from the hospital stay now, but it's certainly not the first time i've seen &/or heard of midodrine being scheduled inappropriately in the hospital setting. last but not least, since your notes point toward michele having more trouble with tachycardia than with hypotension and since i think you wrote somewhee that midodrine &/or florinef do not generally treat tachycardia/ heart rate, i'll mention a few relevant things that you may or may not already know. while it is true that the direct mechanisms of midodrine & florinef do not act to directly decrease heart rate or control tachycardia, in practice one &/or both do have the effect of decreasing/ controlling orthostatic tachycardia in many of those with POTS/ dysautonomia. the reasons are as follows: the orthostatic tachycardia in POTS patients is generally considered to be compensatory tachycardia, or rather tachycardia that is a result of the body trying to compensate for, or make up for, low blood pressure. while some people have low blood pressure in addition to their tachycardia others have blood pressures that are largely normal; the generally accepted theory, however, is that the uniformly present compensatory tachycardia in those with POTS serves to raise what would otherwise be relatively lower blood pressure. as such, when a medication is used to raise blood pressure, in those with POTS the end result is many times a decrease in orthostatic tachycardia, a phenomenon that's due to there being less need to compensate for - or make up for or raise - a baseline/underlying blood pressure that is too low (since the medication has helped to raise that blood pressure). in some people measurable blood pressure will increase & in some it may not, but if tachycardia is improved the medication can still be considered as having the intended effect (at least in part). in essence the idea is for the medication to take over some or all of the work of raising blood pressure (which otherwise is done only via the compensatory orthostatic tacycardia). so while both midodrine & florinef are both generally classified as medications that, by different mechanisms, raise blood pressure, in those with POTS &/or other types of orthostatic intolerance they may indirectly be equally effective in decreasing orthostatic tachycardia &/or managing related symptoms. which - while it's too soon to say for certain - is why the improvement(s), however minor, that michele (& in turn you) have noticed could in fact be a result of the new medications (though florinef won't have reached its FULL effect until she's been on it for a longer period of time). hope this helps at least a bit, melissa
  15. to all who have responded after my post: yippee! thanks for letting me know that my response was helpful in at least some way. i'm just glad that the mere length of my ramblings didn't scare everyone from reading &/or scanning to find what might be relevant to his/her particular interest(s)/ curiosity; i never plan to write such a book but when i do so i'm always worried that the length will be too intimidating . and EM, i don't think i've received a bow - virtual or otherwise - since my travels to Japan many years back; thanks for making me feel extra special & giving me a big smile (by way of helping me to recall some great memories). to suzy: to reiterate the answer ernie gave you and extrapolate on it further, pyridostigmine bromide (aka mestinon) is most definitely NOT used only for PAF/ autonomic failure. as ernie mentioned it is a medication that was originally designed for use in the treatment of myasthenia gravis, an autoimmune disease that for the most part is unrelated to any type of dysautonomia (the only relationship being that, for some individuals, dysautonomia is known or suspected to also be autoimmune in origin). in more recent years, however, clinical research (started at mayo & continued at other institutions) as well as clinical use has shown that mestinon can be helpful in treating the orthostatic hypotension seen in many cases of dysautonomia. while certain research trials may be limited to testing its use in a specific type of dysautonomia, in practice it is prescribed for the SYMPTOM of orthostatic hypotension &/or in some cases of orthostatic intolerance even without hypotension rather than for any specific diagnosis; as such - in addition to its original use in the treatment of myasthenia gravis - mestinon is prescribed to individuals with a variety of dysautonomia diagnoses (as well as in some other clinical situations, i.e. GI dysmotility without generalized dysautonomia). bottom line re: your original question/ concern = your doctor prescribing (or discussing the possibility of prescribing) mestinon does NOT in any way point to a diagnosis or even any suspicion of PAF/ autonomic failure. hopefully that answers your question and, more specifically perhaps, puts you at ease . that's all folks...no book writing tonight! melissa
  16. momwithsix (& karen & EM....b/c there are notes for you too!) - first of all welcome. per the norm i am obviously sorry that you have reason to be here at all, but being that it is what it is i'm glad that you found us...both for your own sake & - if i'm being honest - for my own selfish reasons! while you've likely already figured out that those of us with autonomic failure are a minority here on the forum, rest assured that the forum as well as the rest of the website are still great places to be with resources galore...more information than you'll know what to do with (as well as links to even more info elsewhere), loads of applicable conversation, & last but certainly not least a stellar support system. i have a form of autonomic failure that is also referred to as progressive autonomic neuropathy. for all but the most stringent purposes it's considered synonymous with PAF (aka when i have appointments with docs, including top autonomic specialists, the diagnosis box that gets checked off is "Autonomic Failure (PAF)". as someone who has been pretty active on the forum over the years and who, while i'm somewhat quieter at the moment, still reads almost every post by way of moderating, i can confirm that while there are a few, there are not many on the forum with PAF. i do know that dinet has a few additional members with the diagnosis who are not necessarily active on the forum (as membership on the forum is separate from membership with DINET itself), but the population is still decidedly small in comparison with other diagnoses (POTS, NCS/ NMH, OH, etc...); perhaps as a few more become active on the forum there will be some discussions specific to autonomic failure & other "lurkers" will be inclined to join in. regardless though it is no exaggeration to say that many of the forum discussions are relevant to autonomic dysfunction in general rather than any specific diagnosis, so you should have no trouble joining in, gathering replies, etc. that said, there ARE some issues that are diagnosis-specific; for those sorts of things others will offer support and a listening ear but having others who have "been there done that" more exactly is obviously best. for what it's worth, though, while others with the same diagnosis may be a bit more likely to have certain issues/ symptoms/ concerns in common, due to the significant variations even within any given dysautonomia diagnosis, this is certainly not an absolute. in the land of dysautonomia, in other words, there are some issues wherein it is just as likely that someone with a different diagnosis will be able to commiserate - and hopefully offer sage advice - than will someone who is diagnostically similar. all of which is to try to say that, for both your own sake & that of others, i/ we hope that you're not put off by the larger number of folks with other diagnoses and - most important - that you decide to stick around. (and - again in the spirit of full disclosure & complete honesty - for the few instances that diagnosis-specific issues DO come up & matter, i want & need to you be here for my own selfish reasons!!!) but moving on..... and to karen: i am embarrassed to have to admit that i can't for the life of me remember if i ever properly welcomed you &/or have otherwise conversed with you here on the forum before now. i know that i have read your posts and that i have MEANT to welcome you, chime in, etc, but whether or not it has actually happened is another thing all together, a reality for which i am sorry & offer my humble apologies. if i haven't offered a greeting until now i hope you will accept this as your welcome as well & that you will believe that i certainly did not mean to pass you by. b/c while i have given up on thinking i can keep up with welcoming EVERY new member, i do make an extra point of welcoming & introducing myself to the few new folk who are lucky enough (haha...note heavy sarcasm) to be fellow members in the "autonomic failure club" so to speak (&/or anyone else who i at some point realize i've somehow failed to previously "meet"). and to EM (& others curious about diagnostic distinctions between the dysautonomias): generally speaking there isn't one specific test/ test result that determines an individual's type of dysautonomia. that said - at the admitted risk of thoroughly confusing you & anyone else who might be reading - there are some cases in which a particular individual's diagnosis may at times hinge on the result(s) of a particular test. clear as mud??? to be quite honest i'm too written-out at the moment to manage a specific yet succinct answer to your question, i.e. an explanation that has enough details to satisfy but not so many that it better resembles a jargon-ridden scientific treatise. as such i'll stick to the super basic for the time being & - while i might need a reminder nudge to get me going - will be glad to try for a more detailed answer later if so desired. first & foremost, you're very right in saying that there ARE many things that overlap between diagnoses; while some diagnoses have more signs & symptoms in common than others, generally speaking many of the signs & symptoms of dysautonomia are common to more than one diagnosis. that said, to briefly address your specific question, a very distinct difference between POTS & PAF is that the hallmark orthostatic tachycardia (generally specified as an increase of at least 30bpm) required for a POTS diagnosis is NOT seen in those with PAF; in autonomic failure, rather, the tachycardia is generally absent b/c the compensatory mechanism that is responsible for the tachycardia in no longer intact. unfortunately, while not having tachycardia may sound advantageous to those used to dealing with the stress its constant presence can put on the body, its absence causes even more trouble (b/c however uncomfortable, compensatory tachycardia is in fact "compensatory" and, as such, serves an important, helpful, & much needed purpose in maintaining/ stabilizing one's blood pressure & circulation/ blood flow throughout the body & brain. but this is starting to turn into that dreaded treatise (or some other variety of lengthy ramblings). bottom line is that the very name & definition of POTS - postural ORTHOSTATIC TACHYCARDIA syndrome - excludes those with POTS from a concurrent diagnosis of PAF/ autonomic failure (which by very definition of "failure" means that compensatory orthostatic tachycardia is absent). hopefully that makes sense? all in all that's just one aspect of diagnosis & accompanying explanation b/c, as i'm sure you know, there are many who don't have tachycardia who don't have PAF/ autonomic failure but instead have any one of another type of dysautonomia such as NCS or NMH. as you mentioned in your question, urine as well as blood chem profiles/ panels can be part of diagnosis, as can results of any number of tests including the TTT, valsalva/ deep breathing, cold presser, QSART (aka sweat test #1), thermo-regulatory (aka sweat test #2), and many more, with the "many more" being a truly expansive - and seemingly endless! - list of tests that encompass virtually all body systems, something that can become relevant in a diagnosis of the more systemic autonomic failures. in autonomic failure it is not unusual for there to be measurable autonomic-related dysfunction or even failure in one or more body systems, i.e. not "just" a temperamental GI tract or an urgent bladder (as if those aren't bad enough!) but, for instance, total failure of one's stomach &/or intestine(s) &/or bladder. but i'm again writing way more than my current cognition &/or energy allow so will leave it at that & hope that it helps at least a bit & doesn't simply add to your (&/or anyone else's) confusion. to wrap up with momwithsix's original post, though.... momwithsix - you mention the possibility or perhaps the reality of driving yourself crazy with the whys, what ifs, hows, what nexts, etc. it is entirely understandable and, to a certain degree, allowable to go through a period of adjustment after what is still a very new diagnosis for you; that adjustment period will likely encompass everything from grief & anger to frustration & endless questions to a seemingly endless variety of other emotions & feelings that you didn't even know you had in you. but while there will be a degree of ongoing adjustment & acceptance that never ends, you will at some point have to figure out how to best navigate your new "normal" as well as you possibly can. there's nothing wrong with asking questions & seeking answers but you can't let that search keep you from living to the extent that you are able in the here & now. there's nothing wrong with hoping for better health, more successful treatment & fewer symptoms, but none of these ideals can be a prerequisite for living your life & making the most of things the way they are. re: things you specifically mention i'll address each individually: #1. "what is it?" & "what caused it?" aside from the technical definitions you'll only really learn & "get" what it is by living & learning it day to day. for the official info the main dinet info page has good links, and you'll learn loads from the forum discussions as well. re: "what caused it", try not to drive yourself crazy. while some measure of looking into causative factors can for some be helpful in that it may at times provide some direction for the treatment & management of one's illness &/or simply provide a better understanding of our crazy bodies, more often than not people do not know the answer to the "what caused it" question so don't allow yourself to be consumed by that one either. a bit of investigation & asking is worth the time & effort but generally not more. #2. re: managing symptoms: it is very true that some people are able to find treatments that manage their symptoms quite well; others are not as lucky, but what's most important is that in the midst of seeking the best symptom management possible you cannot use your success in this realm to define you in any way beyond what it is. you can't measure yourself &/or your life by your symptoms & whether or not they are well managed or controlled. #3. re: the fear &/or possibility of your PAF "becoming" MSA, in reality this is EXTREMELY UNLIKELY, aka just short of impossible. i won't lie to you & tell you that it's impossible b/c it's not, but neither are a million other things - good & bad - that aren't likely to ever happen...to you or to me or to anyone either one of us has ever met or will meet. get the gist?? it's only just BARELY more likely for you (as someone with a new diagnosis of PAF) to end up with MSA than it is for any other random person, so at the risk of sounding flippant & insensitive, re: this issue i'm going to tell you that you really truly are just going to have to - somehow, someway - GET OVER IT!!! while i know that fears & emotions respond only marginally to logic, the reality is that you accomplish absolutely nothing by driving yourself batty with worry. worry isn't going to keep anything from happening and if anything will only hurt your health by adding undue stress to your system. and in the absolutely infinitesimally likely chance that you do end up with MSA or - statistically more likely - you end up with some other terminal diagnosis, are in a fatal crash, simply don't wake up one way, etc, how horrible would it be to then realize how much of your life you had spent worrying rather than living??? just food for thought.....(prior to which you've hopefully picked up on my direct/ no-nonsense/ dark sense of humor by now so that you aren't terribly offended ) and back to the nitty gritty of the question at hand, i'm guessing that while you just received your diagnosis you have had some measure of signs & symptoms for some longer period? for what it's worth, the longer that you've had your current symptoms the more your chances of having MSA continues to DEcline. which is NOT to say that if you've had some measure of progressive/ increasing symptoms that the reverse it true b/c it's not!!! (see...i knew where the worry mode was trying to go there!!) #3. re: getting back to life: you say that you "want to enjoy your time & your kids like you used to....not curled up crying..." as i mentioned already there's an understandable & acceptable & allowable period of grief following a major diagnosis; don't beat yourself over what is in reality a natural & even healthy reaction to a life-changing piece of information/ realization, i.e. receiving a diagnosis that confirms some measure of ill health is here to stay rather than there being the active hope of "just having to find the right pill &/or procedure" to return you to your former state of well-being. but along the lines of some of what i was getting at earlier, the acute (aka more dramatic & life-hindering) phase of this period is helpful & healthy only for a very limited time. after that it hurts far more than helps, a reality that it sounds as if you may be realizing & experiencing for not only yourself but also your family. in reality the PAF diagnosis in & of itself should not limit you from doing - from LIVING - anything & everything you were doing before the diagnosis. unlike an acute injury i'm pretty certain that you didn't get ill at the exact moment you received the diagnosis, so what i'm getting at is that you should be able to do anything & everything post-diagnosis that you were able to do in spite of whatever your health issues & limitations were before the diagnosis. having a name for something, while at times affirming & validating, can for some people make something seem a lot bigger. so while understanding your diagnosis & your body's limitations obviously have some effect on what you can & can't do, the diagnosis itself shouldn't hold you back. your ability to live life - including the aforementioned "enjoyment of your time & your kids" - can't be something that you define by your diagnosis. you deal with any physical limitations &/ or adjustments of & when they are necessary, but even in the midst of the most extreme physical limitations one can very much enjoy one's time & one's children, so no diagnosis - PAF or otherwise - should take that away from you. without getting into my entire life story, suffice it to say that as a 29-yr-old who - because of the severity of my physical limitations & decline - is living a life that is in most every way anything BUT what i would have ever hoped for or imagined (i'll spare you the details), who has spent stretches of more than a year at a time entirely bedridden, who was offered admission to hospice & "should have" died several years ago now (on a least a few separate occasions; i'm too stubborn!), whose very existence continuously depends on a myriad of tubes, wires, machines & other equipment (all of which i would LOVE to be able to toss off a bridge), & who could readily come up with any additional number of shocking but true phrases about me & my life that would be certain to garnish nauseating sighs of pity, i feel some claim to being able to at least encourage - if not to out-and-out tell - others that no degree or accumulation of illness, disability, or u-turns in one's hopes, plans, or dreams is sufficient cause for throwing in the towel on living life. which by no stretch of the imagination forgoes the very stark reality that it can be & is at times hard as heck, nor does it mean that there's not a time & place for a certain measure of tears, punching pillows, &/or trying to escape. but in the end those things (crying, screaming, punching, hiding from the world, etc) can NOT displace LIVING LIFE. so if you do find yourself unable to get back to living, you're crying for more than contained periods of grief/ frustration time here & there (i.e. all day every day), etc. then i would STRONGLY encourage you to find a someone to talk to such as a counselor/ social worker, psychologist, religious leader b/c you owe it to yourself to work through where you're at so that you can come out stronger on the other side...not only for yourself but for the rest of your family &, most importantly, your kids; there is no shame in admitting something is bigger than your ability to tackle it on your own & there is NOTHING wrong with seeing someone, so if you're feeling stuck - now or at any other time in the future - i would highly recommend it (as would many others who have done just that!) many folks with various measures of chronic &/or serious illness - including many of those on the forum - currently see or have previously seen some sort of professional for some period of time - whether to help with a particularly rough time such as initial diagnosis or simply to serve as a sounding board or safe place for the requisite day-to-day frustrations that often accompany chronic illness, & depending on where you live there may even be options of people who specifically specialize in dealing with chronic illness, though this is certainly not a requirement; so whether its something you decide to look into now or not, i would highly encourage you to - at the very least - file the idea for safe-keeping as a future possibility. most importantly though - whether or not you need an extra boost to help you get there - you need to figure out how to get back to a place of LIVING life rather than just surviving or crying your way through the days. moments of crying & surviving are okay; a life of nothing but is not. #4. re: questions about specific treatments & symptoms i see that you've already received some feedback from others so will forgo adding much more of my own ramblings to the book i've already written. if you haven't perused it already i would also recommend that you check out dinet's main site & the links specific to treatments, symptoms, etc. there's a lot of helpful info there including some that's specific to the things you've mentioned. re: your "how much is enough" question for fluid & salt intake it's generally something that, at least to some degree, varies from person to person; while some published research does offer suggested quantites of salt &/or fluid intake and while some people (me included) have at some time been given "prescriptions" from one or more doctor(s) to suggest a goal or target quantity of salt &/or fluid, within the boundary of following your doctor's orders most people ultimately find that finding what works best for them is a matter of trial & error as well as - perhaps most importantly - learning how to read & adjust to what one's body needs at a given point in time. initially some measure of forcing extra salt & fluids (for those who are instructed to do so) may be needed but most people seem to at some point settle in to what works best for their body, including the fact that many people who at some point had to force extra salt & fluids to the point of some degree of distaste or discomfort later find themselves drinking &/or adding (salt) to the same quantity and more without a second thought b/c for those that find it helpful it generally becomes second nature and another measure of what one could call the "new normal." ah well...so much for my not saying anything about treatment(s) &/or symptoms, eh? ah well. with little reason to stop now (when only one of your questions remains), i'll add that i too take pyridostigmine bromide, perhaps more commonly referred to by its brand name mestinon (if for no other reason than that it's a shorter & easier-to-spell word!), though in the spirit of full disclosure i'll add that i will soon be experimenting with decreasing & potentially stopping it solely b/c we (my doctors & i) are no longer convinced that it's helping in the way it once did. when i first started it i was actually a inpatient research patient at vanderbilt so i can attest to benefits it afforded me at that time not only subjectively but by way of quantitative testing & measurement; at that point it was conclusively part of the "med cocktail" that gave me the greatest quantity & quality of time upright, aka sitting with intermittent (though never prolonged) standing & walking. just as importantly - though not an intended aspect of the research i was there for - i benefited significantly from mestinon's "side effect" of increased GI motility to the degree that i went from a degree of dysmotility throughout my GI tract (gastroparesis, intestinal pseudo-obstruction, & constipation) that had for months been causing almost continuous nausea, pain & vomiting, significant weight loss, & repeated hospitalizations (due to dehydration & electrolyte disturbances) which were all pointing toward an ever increasing likelihood of my soon needing a J tube (feeding tube placed directly into the intestines) to a extended period of marked improvement wherein i had an appetite for the first time in months, had to follow only minor dietary restrictions, had only occasional nausea, pain, &/or vomiting, and was able to meet my nutrition & hydration needs to the degree that i was able to not only stop losing weight but gain back the 30+ pounds i had previously lost, which for the period that it lasted put an end to the repeated GI-related hospitalizations as well as any talk of a feeding tube. in other words mestinon was GREAT for me in the short term. and while the progression of my dysmotility did eventually lead to the inevitable need for various combinations of tube feeding &/or IV hydration & nutrition i firmly believe (as do any of my doctors who were or are involved) that i have the mestinon to thank for gifting me with almost an entire extra year before having to enter the world of feeding tubes & IVs. in general the only difficulty or problem i've ever had with mestinon occurred years back when i attempted to switch from the immediate release/ short-acting pills to the extended-release pill (which would have allowed for once-a-day rather than thrice-daily dosing); unfortunately the degree of my gastroparesis wrecked havoc with the extended-release mechanism of the pill, a problem that essentially led to what amounted to under- dosing followed by the equivalent of a minor overdose. it wasn't really a problem with mestinon but rather with the specific release-mechanism of the pill and - perhaps more accurately - with my gastroparesis impeding my stomach's ability to properly digest medications, something that was accentuated in the case of extended-release formulations. but i digress. all in all mestinon has been one of the many meds that have definitely helped me over the years. my soon-approaching trial with decreasing & possibility eliminating it from my regimen is only an attempt to see whether or not it is still providing any measure of its original benefit and not due to any problem(s) whatsoever; i learned long ago that any given med's usefulness does not uniformly remain stagnant but rather may diminish or with equal likelihood increase or otherwise change over time &/or when later revisited. but that is MORE than enough of my ramblings for a good long while. yikes. i can't imagine that i could have left anything out &/or that you'd dare to get me started on writing more but joking aside feel free to be in touch &/or ask any questions of me &/or folks in general. i hope not only that there's at least a small nugget of something helpful somewhere in my ramblings, but also that whoever needs it is able to find where its hiding! melissa
  17. babette et al - for a completely unrelated tangent, have i ever told you how much i love your name babette? not sure whether it's your actual name or just for the computer, but it's a name i've loved since first hearing it in french class some years ago. at one point i had wanted it to be my "french name" (when we had different names to use in class) & was bummed when someone else chose it first. i did like nathalie too (and still do to this day), but babette had been my first choice! how's that for something unrelated to the matter at hand?? ah well. but moving on..... glad to hear that you made it to & fro your appointment okay, and glad that you have a good initial feeling about the doctor. i've been a patient of a variety of doctors at the clinic myself including the director of the autonomic lab dr. shields. if you don't mind i'm sure we would love to know who you saw? (you're obviously not under any obligation to share & it is entirely understood if you'd rather not, as i can certainly understand that not sharing can allow freer reign re: sharing experiences good & bad. some people incorrectly think that doctor names aren't allowed to be posted at all on the forum though which is not the case either. so share if you'd like, don't if you'd rather not, &/or feel free to PM me privately) i am sorry to hear, however, that things weren't a bit smoother when it comes to logistics, scheduling tests, long waits, etc. can't say that any of it surprises me, nor is any of it the worst of what happens in the medical world, but that still doesn't make it any less of an inconvenience for YOU! after the fact i feel a bit bad for not encouraging/ suggesting different pre-appointment planning for you as well, but i suppose hindsight is 20/20, and in all honesty i'll admit that certain pre-appointment "protocol" so-to-speak is so automatic for me at this point that it doesn't cross my mind to pass on the info to others. so while the omission was in no way intentional i am still sorry for not having been able to help out more in advance! realizing that you may have no idea what i'm referring to, it's mostly the issue of who you had called & spoken to prior to your appointment in regard to questions you had about potential tests & the like. as you've now learned - and thoughtfully shared for others to store in their "how to survive as a patient" file - it's always best (though not always easiest!) to take any & all questions to the closest/ most direct possible source, i.e. the specific doctor's office/ secretary/ assistant rather than a departmental office or an appointment office. unfortunately this closest/ most direct number - and thus the best number - is not always (and perhaps even rarely) the number that is front & center in or on information that is sent your way or otherwise offered in the midst of phone calls and/ or other confirmation/ reminder notices you receive but instead often takes a bit of digging on your part to track down. this isn't always the case but it is certainly not unusual to hit some walls while trying to get to who you really want (& need!) to talk with; this extra effort is usually recouped in full though by better communication with the doctor/ office at hand in the long run and, as such, is almost always well worth it. obviously it's an imperfect system (surprise, surprise) when you as the new patient have to be the one who figures out the exact person/ place you need to call for tests to be scheduled in the best way, and realistically speaking even if you HAD called the doctor's office there's no guarantee that all of the right tests would have been scheduled more conveniently (aka as part of the same trip). regarding your extra wait time that is certainly a frustration that many, if not most of us, can relate to & have experienced a few if not many times ourselves. you seem to have a pretty good attitude about it and you're right in realizing that it does happen & is unavoidable at times. i know for me the way a doctor & his/ her office handles it can make a huge difference in how i feel about it on the receiving end. i can also understand the difficultly though, regardless of how much you understand a situation, of a longer wait making it tougher on you & your body physically; it's something that i've certainly had to deal with on more than one occasion, as i'm sure many others have as well to varying degrees. that said, i will offer a bit of unsolicited advice for the future (for you &/or anyone else who might be reading ). most exam rooms have exam tables, in which case there is NO reason not to simply lay down if & when you feel the need to do so when waiting...whether for five seconds or five hours. based on what you wrote it sounds like you didn't have that option, and the fact that you may have continuously been thinking that it would have been "just a few more minutes" may have made it a bit more confusing than if you had known from the start how long you'd end up in limbo, but if/ when you're ever in the position of waiting for an appointment and needing to lay down there is NO reason not to tell the front desk, nurse, anyone you can find exactly that, i.e. "i NEED to lay down." if you simply ask &/or present it as a convenience, i.e. "do you have a place where i can lay down", "if you have a place where i can lay down that would be great", etc. it doesn't come across as nearly as important as if you present is as a necessity, i.e. "i NEED to lay down." that said, there still won't always be a place offered. and/or perhaps it's the sort of thing where you would like it but don't feel that you do need it quite enough to warrant asking/ demanding. bottom line being that - if you really need to do so bad enough & make that need known without success, you wouldn't be the first one to then lay down on the floor of the waiting room, office, you name it. it may look funny but i guarantee it causes a heck of a lot less stir than actually passing out. and oddly enough you might be surprised at how many people don't even seem to notice or care! best case scenario it can sometimes get you access to a better place to lay down b/c when people see you're willing to lay on the floor they realize that you really need to do so & aren't just in the mood for an afternoon nap. one other thing to mention re: waiting is that you can often ask for an idea of how long it might be so that, if the wait is going to be particularly long you can at least go elsewhere for better food/ drink/ rest/ etc. many times if desks aren't willing/ able to tell you a specific/ defined "how long" they will tell you that you have enough time for a defined task/ excursion, i.e. they'll tell you have plenty of time to go get a drink, or go to the bathroom, or go for a short walk/ ride, or get lunch, etc. obviously this doesn't always work, and it sounds like your situation today was one of those times wherein no one expected the long wait as it kept getting longer & longer & longer little bits at a time. but now re: the issue of the size of the clinic & the need for a lot of walking..... as a frequent flier at cleveland clinic for years i do want to chime in with a correction re: any need to bring your own wheelchair. babatte i am certainly sorry if you had a conflicting experience &/or were somehow otherwise misinformed by someone who didn't have correct information, but while the clinic can certainly be overwhelmingly large - with appointments & testing in various locations requiring a good amount of back & forth - they make a point to have ample wheelchairs available for anyone who wants or needs them - patients, visitors, family/ friends, etc - as well as, if wanted &/or needed during, volunteers &/or transporters that will push you anywhere in or around the entire complex (though that's not mandatory; you're welcome to use the chair on your own as well). during normal "office hours" all of the main entrances have numerous volunteers ready to assist anyone willing to accept the assistance. while, at a place of its size, there is simply no way that they can have empty/ unused wheelchairs & volunteers ready & waiting at each & every possible place they might be needed, there are few places that are far from some type of information &/or appointment/ check-in desk wherein any staff of volunteer is readily able to call for a chair; in most cases someone brings it within 5-10 minutes. there are various additional transportation "helps" too that can be helpful depending on where you're coming from/ going to (shuttles, motorized carts, etc.) such that - as long as one isn't held up by not wanting assistance (something that i know can be an issue for some...i had a roommate once whose husband "couldn't" visit b/c his cardiac health limited how far he could walk & he refused to be pushed in a wheelchair , my own father would be much better off at times with wheelchair assistance when my inpatient room is particularly far away but wouldn't hear of it, etc) - the size of the clinic & the need to get from one place to another (and perhaps back again!) is something that may take some extra time and planning but should NOT be prohibitive nor should it worry anyone who doesn't already have &/or need their own wheelchair. similar to an airport (&/or anywhere else with a lot of extra walking), it IS a place - depending on where one's appointments &/or testing are located - that might require some people who are usually able to manage without a wheelchair to utilize the extra help. re: what's available after hours, while the volunteers/ chairs/ help might be a bit less "front & center" so to speak it is still there for anyone who asks. it might take a bit longer for a chair to arrive, etc, but even if a long wait or late appointment leaves someone there "stuck" after hours there is help available to get anyone to where they need to go. last but not least, while parking at the clinic can - depending on which building & lot one is dealing with - be quite the project in & of itself (aka it's not always particularly close), most if not all of the buildings with patient appointments have valet parking that - at least for anyone with a disability parking placard (temporary or permanent, from any state) - is rarely more expensive (and quite often less so) than parking on your own (i've done the math...essentially it works out that once you hit 2.5 hrs in the cheapest available lot you'll be paying just as much or more than the cost of valet if you have the placard; other lots hit that same price in even less time) so considering most clinic visits last at least a few hours, valet parking is generally the way to go. of course if i ran the world i would forbid charging for parking at any sort of hospital or medical facility at all, but that's here nor there. reality being what it is (which is that, as a hospital/ facility smack dab in the middle of a city, parking is far from free), for anyone that has enough issue with walking distances to have a disability placard valet parking is readily available for & usually won't cost you any more (and sometimes less) than parking in the lot. (for what it's worth - since i'm already rambling on with far more info than anyone asked for or cares about - i'll mention that one possible exception for my "valet is easier" advertisement may be - depending on the weather, one's personal preference, etc - the Crile building, aka "A building"; for those with a disability placard there are outside/ surface lots JUST outside the entrance that cost the exact same flat fee as the valet parking available on the other side of the same building. as such, while the lot isn't necessarily cheaper or easier than valet at the Crile/ A building, unless the weather is particularly bad this is the one case where valet doesn't provide all that much of an advantage either, which is all to say that in that particular locale it's largely a toss-up. personally i prefer just using the lot as it leaves the option of leaving, getting &/or putting things in &/or out of the car if needed, a convenience that wouldn't really exist with other lots anyway since they'd be so far away and, as such, isn't lost to valet assistance but which, with the crile/A lot so close, is potential reason enough for me to go with the lot. but anyhoo.... while no place is perfect & while - even at the best place &/or with the best intentions - people & needs can, will & DO slip through the cracks, as someone who has been a patient &/or a visitor at more hospitals & medical centers than can be good for anyone's health, as someone who is now actively managed by a care team at cleveland clinic i have been very impressed (as has my family) by the efforts of many of the employees & volunteers we have encountered to help patients/ families/ visitors manage the large campus that is the clinic. my mom - who, by her own admission, often looks (and quite often is) lost - reports that she rarely makes it through a hallway or corridor without at least employee or volunteer asking her if she needs help, people have gone above & beyond to help my mom (& thus me) juggle various combinations of me, bags/ medical equipment, & the car in the midst of scenarios ranging from brime time discharges to late night emergency admissions, and - perhaps my favorite - after my first appointment one of my now doctors (a senior attending who, after retiring from surgery, is now the director of the TPN Management Team) actually personally escorted my mom & me the entirety of the walk from one building to another to "point us in the right direction" and, as he was doing so, offered to help push my chair &/or carry bags (i was getting admitted). yes, the way things "should" be everywhere & always, but - as most if not all of us know - rarely the way they are. well then, how's that for an extensive digression?! i certainly hasn't intended to get on a soapbox about the clinic but realize quite readily that i did just that. oops . for what it's worth - lest anyone think i have some sort of proverbial wool over my eyes & think that things are perfect at the clinic (or anywhere else for that matter) - i could EASILY write just as much and (loads) more on not-so-great experiences (aka bad, negative, nasty, horrible, disgusting, horrific - you name it!) from a wide assortment of medical facilities/ hospitals nationwide including some from the clinic; so no, i am not oblivious to the less-than-ideal reality that is life as a patient....perhaps it is in fact the number of negative experiences i have had (& heard about) that compelled me to ramble on so about a bit of the positive effort i have seen at one locale. regardless, what i HAD meant to do was to simply share &/or clarify correct information re: the clinic's wheelchair/ transportation/ size situation, something that is relevant and which - in the midst of the rest of my ramblings - hopefully didn't get lost . and certainly if anyone every has any specific questions re: logistics of a clinic visit (what's where re: wheelchairs, parking, entrances, buildings, etc.) i'm more than happy to help in any way that i can. stepping - or rolling - off my soapbox (at least for a spell...) melissa p.s. do you have any specific questions about the tests you'll be having? it sounds like you've already had a tilt table? in my experience nothing else you're having done should be any rougher than that, and most of the tests should be much easier. do make sure you understand in advance any meds you need to stop & for how long; it always pains me to hear of people who have gone through tests that are only minimally useful b/c they were for some reason on meds that they shouldn't have been on for the tests (or not quite as bad but still rotten, people who show up for testing & can't have it done b/c of similar issue with meds) SO...biggest advice from me is to make sure the rules re: stopping meds are 150% clear to all involved!! if you have other specific questions about certain tests don't hesitate to ask.
  18. hi zoe - i need to get off the computer for the night so am going to keep this super short for now, but a few quick things: 1. i have no personal experience with any doctors out west - california or otherwise - but if you haven't seen it already the direct link to dinet's physician list is: http://www.dinet.org/physicians.htm. additionally, as listings generally vary a tad bit from group to group, there are two other listings i'm aware of: NDRF (national dysautonomia research foundation): http://www.ndrf.org/physicia.htm (link should take you directly to the physician listing; if not the listing is titled "NDRF Medical Network" on their main website) American Autonomic Society: http://www.americanautonomicsociety.org/ ("Physician Referral Listing" is toward the middle of the links along the left side of the page; the way their site is set up keeps me from being able to give you the direct link) i'll be honest with you that, in general, the autonomic specialists have tended to be a bit stilted geographically such that there have been very few west of the mississippi. that said, i have heard some people in more recent years report good experiences with physicians out west (california & elsewhere). 2. i do have a form of autonomic failure that is also referred to as progressive autonomic neuropathy. for all but the most stringent purposes it's considered synonymous with PAF (aka when i have appointments with docs, including top autonomic specialists, the diagnosis box that gets checked off is "Autonomic Failure (PAF)". as someone who has been pretty active on the forum over the years and who, while i'm quieter at the moment, still reads just about all the posts, i can tell you that while there are a few, there are not many on the forum with PAF. to my knowledge we have never had anyone participate who has MSA/ Shy-Drager (though i do recall one or two people who had family or friends with the diagnosis); i do know that dinet has a few more members with the diagnosis who are not necessarily active on the forum (as membership on the forum is separate from membership with DINET itself), though there are still very few. while it is not the case for PAF, for those with MSA/ SD there is another organization focused more specifically on that diagnosis. all that said, having read your posts & some of your updates, i'll offer my non-medical opinion (which i realize you didn't ask for!) while i would certainly agree - if for no reason other than your seizures/ seizure-like episodes - that you do seem to be dealing with something more than "just" POTS &/or NCS (as if those aren't plenty for anyone!), i haven't heard/ read anything that seems to indicate that you're dealing with PAF or MSA/ SD either. for what it's worth i'll also through it out there that many or perhaps most of the autonomic specialists, when really pushed, will acknowledge that the currently-accepted diagnostic categories are far from perfect and that, as such, a good number of individuals who most certainly have autonomic dysfunction do not necessarily "fit" into a more specific diagnosis/ category at this point in time. i would be happy to ramble on further but for now will leave it at that . 3. now to try to address your question about the lengthy seizures, brain damage, etc. first of all, based on what i've read/ heard of what you're dealing with (from your posts/ updates), i don't think you're probably having what are technically seizures by the technical definition. that does NOT mean that i think you're not having seizure-like episodes and/or that they aren't as horrible to deal with and/or as real, etc.....what it does mean is that the neurological risk that would, by definition, come with lengthy epileptic/ neurological seizures as they are technically defined is not the same. it's more than i have time/ energy for to explain here but while it is certainly not impossible for someone with any type of dysautonomia to have a co-occurring seizure disorder, by definition seizures aren't a part of dysautonomia. that said, there are seizure-like episodes that some of us with dysautonomia can & do have that - to the untrained, at at times even the trained observer - look identical to "true" seizures. these "convulsive" seizures (which i've heard named in several different ways, i.e. convulsive seizures, cardiac seizures, autonomic seizures, etc) don't originate in the electrical circuitry of the brain as "true" seizures do but are instead a result of diminished blood flow to the brain. that's the short version. and back to your question, if these are the type you are having then they are actually not as risky as "true" seizures of the same length would be neurologically speaking. (that is, similarly to with fainting/ syncope, as long as the body isn't forced to remain upright when they're happening.) hope this helps at least a bit, melissa
  19. okay...i promise that i AM going to come back later & write a response which - per my "norm" - will probably be pretty lengthy (i.e. i tend to go for one extreme or the other...not too good at the middle ground ). before i do so though, how old is your daughter now? i apologize if i missed it in this post or forgot it from another ( i read them all but retaining them is another story altogether...). some of my reply isn't age-dependent but her current age/ stage will have some bearing on certain things i might mention so if you can reply with a quick one-word (er..one-number) answer i'd really appreciate it. in the meantime know that you & she are both in my thoughts & prayers. i know those words can seem rather empty at times but they represent genuine & heartfelt sentiment nonetheless. but anyway.... i'll be back later.... love & hugs, melissa
  20. i'll try to get back later with a more thorough reply, but if you search the forum for dr. shields/ robert shields you'll find what i've written in the past (as well as some of what others have written). in short there are people who have good experiences in both departments at cleveland clinic but the approach to testing & evaluation is different depending on your intake, so to speak (i.e. cardio clinic vs. neuro appt with specific physician). one approach is not necessarily better than the other....just different. such that depending on the person & the situation, history, etc one approach might make more sense. there is a LOT more info in earlier posts! (& i'll try to get back to write more myself later &/or at least link to &/or copy the old posts here) melissa
  21. firewatcher - obviously i'm not futurehope's neuro , but i've been on very high doses of B12 for years as prescribed by one neuro originally and - over the years - agreed upon/ represcribed by several other neuros, cardios, PCP/ internists, autonomic specialists, etc. all that to say that, between my conversations with a good number of doctors in a variety of specialities and my own research/ reading/ knowledge, i'm pretty confident telling you that B12 is NOT something that has any association with hallucinations of any type. hope this helps (& hope you do find the answers you're looking for!), melissa
  22. great idea EM...sounds like fun & if the arranged day/ time works for me & my uncooperative body i'll definitely join in. while my particularly high level of unreliability dictates that my availability/ preferences should be pretty low on the list of priority when it comes to scheduling, i'll ramble on a bit re: days & times wherein i'm more likely to be able to join the party, as well as mention days/ times that are definite neighs. as i know is the case for many of use, i come with the reminder that at any given time there lies the very real chance of my hitting a bad week/ day/ hour wherein, prior plans/ intentions aside, i'm rendered MIA (to put it nicely). with that said... #1. as a general rule afternoons/ evenings/ nights tend to be better, i.e. anytime between 2pm & midnight. that said, i seem to be stuck in a wacky sleep cycle as of late wherein - generally though not always after pushing myself physically - i will sleep not only through the night but into & through most of the next day with NO possibility of forced arousal any earlier, i.e. it may be impossible for me to wake up any earlier than 7 or 8pm (after going to sleep around 11pm the night before). for better or for worse, this hibernation period of sorts is then often followed by my being quite widely awake from my 7/8pm wake-up all the way through the middle of the night & early morning hours & into the next day so that, in essence, after sleeping through one day all together, i then end up pulling an "all-nighter" of sorts. at this point i'm usually able to then stay up through that day wherein i'll go to sleep that night at what would be considered a normal hour. i used to fight this hibernation/ up-all-night cycle with a vengeance and was, without fail, not only consistently unsuccessful but increasingly frustrated; more recently i've decided to just go with it. if this were my only issue (ha! don't i wish?!) such that it were the sole thing affecting my unreliability, inability to work/ volunteer/ make commitments, etc then it would of course be well worth further exploration into & resistance against the issue; in reality, however, while it is admittedly odd & not what i would choose/ recommend, in & of itself it is not making me/ my body/ my schedule any more unreliable/ unpredictable than is already the case such that - with my doctor's blessing & (to my surprise) encouragement - i'm now trying to go with the flow. so whether i'm still sleeping at 5pm or wide awake at 4am, aside from doing what i can to keep up with vital medical tasks (IVs, Abx, etc), i don't fight the ridiculously long periods of sleep and, on the other end of the spectrum, enjoy/ appreciate/ take advantage of times/ hours that i am relatively awake & alert (rather than waste them trying to force sleep).....even if it happens to be 3:30am. not ideal, but in the reality that is my life, certainly not the roughest thing to deal with and - with my doc's support/ encouragement as armor against my parents' comments/ faces - it is now much less of a stressor now that i'm not fighting it (aka the "fighting it" had, in essence, become more of a stressor than the issue itself). but anywhoo...how's that for a lengthy tangent?? (i've actually been meaning to post on the issue to see if any others have/ had similar scenarios so suppose that now i'll only have to copy/ paste these ramblings, add a question & voila) bottom line as it relates to this post - yes, it does/ did actually relate - is that while the "mornings are bad, afternoons/ evenings/ nights are good" rule still often holds, there are some days wherein i don't enter the land of the living for even an hour and, conversely, every 7-10 days or so there's one day when i'm bright-eyed & bushy-tailed (minus the tail) through night & the wee morning hours into the dawn of a new day and, as such could in fact join in a party scheduled for an earlier time of day. #2. re: specific days/ times that are better/ worse for me the few worth mentioning are as follows: tuesday evenings, approx. 5:30-8:30pm or so, would very rarely work for me. friday evenings - say 6pm on on for the sake of having something to say - are one time that i periodically have what borders on qualifying as a "social life" wherein, when contributing factors properly align (once-a-month meeting time, a good day for me, okay weather, accessible gathering place, etc), i occasionally have a shot at reclining on a couch other than my own at someone else's house to watch movies, play games, etc. all which to say that, while it would often be just fine, there are a few instances here & there wherein friday evenings aren't good for me . monday late mornings/ early afternoons my home care nurse comes....currently biweekly, though has been more or less at times. aka between 11am & 1pm (some) mondays might not work (which, unless it's one of those wacky all-nighter days/ nights, means anytime before 1pm is out). sundays late morning/ early afternoon i TRY to get to church whenever i possibly can, which - times i'm in hospital lock-up excluded - ends up averaging around 50%. not so grand by most standards but for me, especially after a year & a half wherein it was impossible for me to get there at all, not all that shabby. as such, when i'm lucky sundays from 10:30am to 12:30/1pm are bad (which, again outside of the wacky all-nighter gigs, means anytime before 12:30/1pm is a scratch). so.....in summary - plethora of extraneous ramblings aside - afternoons/ evenings/ nights are generally the best bet EXCEPT many sundays & mondays before 12:30/1pm, tuesdays 5:30-8:30pm, & fridays after 6/7pm. other than my general underlying unreliability, any other time(s) would/ should usually work lol. i love my propensity for spending WAY too much time/ energy on replies that should really take a few minutes & few lines. ah well. not a huge deal but too bad as the time/ energy would i'm sure be much better utilized in replies elsewhere. perhaps (hopefully) i at least give someone a laugh (at me, that is). melissa p.s. i'm in ohio, so EST (eastern standard time) for me. p.p.s.for better or for worse, there's a high likelihood that my giant kitty (who thinks he is also part dog, part human, part divine, etc) would/ will also make an appearance on/ in any webcam event that ends up happening .
  23. jan et al- others have already addressed firefox so no need to repeat that. some additional options for other browsers - google chrome & internet explorer to be exact - are as follows: for google chrome (my personal new favorite in most, though not yet all, regards) you can go about doing the exact same thing in two different ways. take your pick: option #1 similar (if not the same) to what others have already described for at least some versions of firefox, holding the CTRL key down & pressing the "+" key will increase the text (continually, aka each time you do it, at least to a point). conversely - just in case you get carried away - holding down the CTRL key & pressing the "-" key will similarly decrease the text (& will continue to do so with each repetition). last but not least, rather than have to mess with lots of "+" & "-" repetitions to get back to the standard settings (which is likely where you started, at least the first time around), you can hold down the CTRL key & press "0" (zero). option #2 for another way of doing the exact same thing as above (the ramblings labeled option #1) left-click on the page/ paper icon (looks like a sheet of paper with its upper right corner folded down), which is on the toolbar at the upper right hand corner of the browser, just to the left of tool/ wrench picture/ icon (the rightmost picture/ icon). having left-clicked, scroll down to where it says "text zoom" & - voila - you should see options for adjusting the text to suit your fancy. [if the drop-down menu is still there when you're finished, left-clicking again on top of the page/ paper icon (aka sheet of paper picture) again (or just about anywhere else on the screen other than on the drop-down menu itself) should make it disappear.] for internet explorer (the few more recent version/ editions) there are again, as with (& almost identical to) chrome, two different ways to do the exact same thing, as well as a third option that's a bit different all together. read on: approach #1. similar to the aforementioned descriptions of operations in both firefox and chrome, holding the CTRL key down & pressing the "+" key will increase the text (continually, aka each time you do it, at least to a point). conversely - just in case you get carried away - holding down the CTRL key & pressing the "-" key will similarly decrease the text (& will again continue to do so with additional repetitions). last but not least, rather than have to mess with pressing "+" & "-" ad nauseum to get back to the standard settings (which is again where you most likely started, at least the first time around), you can hold down the CTRL key & press "0" (zero). approach #2. for another way of doing the exact same thing as immediately above (the portion labeled approach #1), left-click on "page" in the upper-right corner of the screen toward the right side of the toolbar, just to the left of "tools" (the rightmost word/ icon). having left-clicked, scroll down to where it says "text" & - voila - you should see several options for adjusting the text. [if the drop-down menu is still there when you're finished, left-clicking again on top of "page" again (or just about anywhere else on the screen other than on the drop-down menu itself) should close it.] approach #3. alternatively, for an alternative approach not yet mentioned for the other browsers, if you want to adjust the ENTIRE page/ screen - as opposed to only the text itself - at the lower right hand corner of the browser you should see "100%" (or less likely 125%, 75%, or any other percentage for that matter). just to the right of that number/ percentage there is a tiny arrow that points down; left-click on the arrow & a menu will appear with a variety of percentile options which, when chosen, will increase or decrease the appearance of your entire browser respectively, i.e. if you start with the setting at 100% & change it to 150% everything will be 50% larger, including but not limited to the size of the text. there are also options for a custom setting (wherein with some limitations you can enter a specified percentage of your own choosing) as well as zooming in or out, which in effect acts to increase or decrease the currently set percentage by 10% increments respectively. when using this approach (adjusting the entire screen/ browser view rather than just the text) you may end up not being able to see the entire horizontal scope of whatever you're viewing; you're always able to scroll left & right - just as you're used to having to always scroll up & down on any given webpage - but the left & right scrolling might get a bit tiresome after awhile (depending on how much a particular site would necessitate your having to do so). any/ all adjustments that you make in regard to text &/or overall view sizing can of course be undone/ changed so there's nothing to keep you from fiddling with the settings until you find what's best for your eyes, head, sanity, etc. hope this helps, melissa
  24. hi ken - my mom stayed there for much of the two weeks that i was research patient at vandy several years ago, as did i (with my mom) for two nights i believe after my discharge & prior to our flight home. all in all it was VERY nice; its current facility was very new when we were there so still not to old of a place. the organization is wonderful; to mention only a few (of many) things they have a shuttle to vandy (or for those who like & are able to walk it's not an impossible distance), many free resources at your disposal (food, laundry, toiletries, books/ movies, etc), wonderful staff & volunteers, some thrifty yet delicious eateries within walking distance, & all in all are there to make your visit as pleasant as possible. here's their website which should provide you just about any & all info you might need or want, including pictures, policies, etc:http://www.hospitalhospitalityhouse.org/ if you're familiar with ronald mcdonald houses, hospitality house is a similar sort of thing but for adult patients &/or their families. in short they are designed to house & serve families from out-of-town who are related to or are themselves patients at one of several area hospitals (either as inpatients or outpatients). re: cost, i did check the current info & they ask for a contribution of $20 per night per ROOM (each of which can include up to 3 people), though they don't turn anyone away for inability to pay; obviously $20/night is very little & nowhere near what it costs them to house people, particularly once you factor in that, amongst other things, many meals are provided. the only other "contribution" of sorts involves helping to clean the room/ bathroom that you stay in/ use while you're a guest. the rooms are nice & clean and i'm pretty sure each has it's own private bathroom; one difference from a hotel is that bedrooms do not have TVs, though there are several community rooms/ lounges where there are TVs. there is a shared computer where people can check email or other info (though obviously not for hours on end since it's for all to share), a beautiful garden, a huge kitchen where you can cook yourself &/or with others &/or keep your own food &/or enjoy meals cooked by a variety of lovely volunteer groups who are signed up most if not every day for at least dinner (& who almost always leave leftovers galore for those who miss the initial serving). last but not least, however, an important thing to note is that you CANNOT MAKE GUARANTEED RESERVATIONS. this is a policy that can be frustrating but is all but universal amongst any/ all similar housing programs at & around hospitals throughout the country. in practice what this means is that, while it is always a good idea to talk with them in advance & let them know when you expect to arrive, they can not hold/ reserve a room for you until you are actually there. this of course means that when you arrive there may not be an available room such that it is important to have another place to stay until a room opens up, something that could take anywhere from one day to much longer; while there is never a guarantee when we were there the guideline was that that MOST people received a room approximately 2-3 days after they arrived, though some were particularly lucky & got one immediately upon arrival whereas others unfortunately (and rarely) would have to wait a week or even more. often the staff &/or volunteers at the house are able to give you a good guess - though it is always still that - the day or two before your arrival of how long the wait might be, and they will always let you know the best way to stay in touch with them to ensure you get a room as soon as possible. look over the website & don't hesitate to call them with any question you &/or your parents might have. they are used to it & that's what they are there for so are more than happy to help. hope this helps, melissa
  25. without wanting to speak out of turn, i'm pretty sure that the study doesn't specifically say anything specific in regard to it being bad for POTS patients but rather that the study presents some indication that, if taken consistently, CoQ10 might aid in lowering blood pressure. again, i'm not certain (& obviously am open to correction) but think that ramakentesh then followed that train of thought with the reasonable logic that this property (lowering blood pressure) could be a bad thing for those with POTS/ Dysautonomia. while this isn't an illogical jump in theory & while there's no harm in factoring in the varied research that has been & continues to be done with CoQ10 as it relates to a wide variety of diagnoses/ etiologies/ pathologies, in reality the application of the study to a different population (i.e. POTS/ Dysautonomia) doesn't hold water b/c the studies that have been done re: CoQ10 & any properties it might have to aid in lowering blood pressure are in the context of dealing with HIGH blood pressure such that, without knowing a lot more about the mechanism behind CoQ10's seeming ability to help reduce/ control HIGH blood pressure it doesn't necessarily follow that it would have the same effect on individuals with normal &/or lower blood pressure. without rambling on & on the bottom line is that the mechanisms behind blood pressure, high blood pressure, etc are simply too complex to carry over the results from the one study & apply it to POTS/ Dysautonomia. so, while i understand the appeal of having something concrete to quote, unfortunately it's not likely (at least not at this point in time) to be that simple . again that does NOT mean that sharing/ discussing results of other studies - incl. those with some mention of relevant issues such as BP - might not be worthwhile. and for any who managed to read my ramblings re: CoQ10 further up in the thread/ discussion i am certainly not trying to push CoQ10 on anyone. this post is intended to be more of a general statement/ caution about clinical research studies than about CoQ10 itself. b/c clinical/ scientific research protocols & procedures are ingrained in my psyche to the degree that i had to jump in to caution against tempting (& initially seemingly logical) connections that in reality don't stand up in court (so to speak). hope this helps, melissa
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