Sunfish

Pers - i can't imagine your frustration. i know how i've been at wits end & ready & willing to go anywhere for some help but fortunately haven't had to cross any borders.... i would agree with all the dr. grubb is the best individual doc i've ever seen. that said the backlog at his office is rough & while he is technically accepting new patients i'm always hesitant to suggest someone else enter in the craziness. i love him dearly & he has been my lifesaver many a time but this past year my body had the bad timing of breaking down big-time when he was fighting his own health battles so that i had to seek out help elsewhere. i'm seeing him again late fall though b/c he's the best i've seen in terms of the "whole picture" autonomic-wise. many docs combined helped me (or didn't) along the way to varying degrees (most helpful autonomic was dr. khurana, plus GI, uro & endo docs) , but the folks at vanderbilt - while i was there for research - were my lifesaver this year. i wouldn't be able to be giving grad school a shot this fall at all without my trip there & the meds it helped me get on. i really liked my doc there & am going to see him for follow-up in a few weeks but since it's research they can't simply do anything/everything under the protocols & i know not everyone has had the experience i have. the research stay (2 weeks) is without cost but i did have to use my insurance for the first day so that might be an issue for you. i don't know if they accept international patients b/c of the possibility of not fitting the protocol upon arrival. the testing is comprehensive (all but sweat tests) but they weren't as comfortable as dr. g with dealing with GI & other problems despite acknowledging the connection. they do see people outpatient aside from research but the wait tends to be longer. i'm also seeing dr. chelimsky in cleveland february as that will be my new locale & i've heard good things about him but when i called the end of april that was the first appointment. perhaps the best thing, like others have mentioned, would be to call for one or more appointments to find out about cost, scheduling, etc. and see where that leaves you. i've found follow-up is always tough with the good docs but that doesn't mean a visit isn't worth looking into. good luck, and if you're going to visit make sure & give plenty of notice so we can have a party (with lots of lounge chairs!) :-)melissa

thanks p - i too have a curious mind that always likes to be satisfied, but this one is going to be put on the back burner for awhile....i think my mind is already on overload other than my ankles i haven't had many joint/ dislocation issues that i know of. i did have wrist problems...carpel tunnel like...that we attributed to cello & piano playing amongst other things. i've always been flexible but nothing over the top...no grand stunts although during stretches for sports teams i was on over the years i always got some looks/comments about how far i could stretch. for me it was just what i needed to do to actually feel a strech! aside from those with EDS i've not heard of POTS-folk being hypermobile, but i obviously don't know all. i do find the potential EDS connection very interesting though in terms of vessels, connective tissues, POTS/NCS etiology, etc... i find so much of this health stuff very interesting....i just wish it weren't always going on in my body!!! thanks for the feedback, :-)melissa

others have already offered many kind & wise words but i still wanted to send a ((((HUG)))) your way. i hope that in the midst of the pain you're also able to treasure the memories you have of your mom. hang in there, melissa

sorry to hear you had such a rough night & i hope your appointment went well. hang in there & let us know how it went when you're up to it, :-)melissa

morgan- i realize you may be wiped out but when you can let us know how the appointment went. i hope the doctor was open & willing to listen but also was helpful in adding his expertise to the mix... just wanted to let you know that i too was glad to read your update. i'm sorry you have to be juggling so very much right now but it's always good to hear from you. i'm so glad to hear that jake is doing as well as he is in terms of his scans & hope the new meds are able to help. i'm guessing the med & know that many have done well on it. steph is much better than i at keeping track of things as i remember his story 100% but couldn't have told you for the life of me who he "went with" on the board. i need to keep flashcards. i can't imagine how odd it must have been to be on the "other side" of someone fainting. i've been around a lot of medical crises, accidents, etc but don't recall ever seeing someone faint....it is great that you're passing info on to the family. i know it must be hard but try your best to take care of yourself in the midst of taking care of all those around you. you have such a great heart & your friends & family are lucky to have you. hang in there, :-)melissa

ggggggggggggrrrrrrrrrrrrrrrrrrrr. traci- for the most part others have already said what i would say. i'm sorry you didn't get more help from the testing & doc today but don't give up.... a BP drop is not necessary for POTS nor for some other autonomic issues. especially with such a short tilt table test. re: the doc's comment about deconditioning, it's something that a lot have heard and does have a grain of truth in it. chances are you are deconditioned NOW and that never helps, but like you said that doesn't mean that's the cause of things. and you're right that it's really hard to stop the downward spiral (of deconditioning) when you're not able to be upright without misery. for a lot of us one goal can be to find some type of treatment that helps enough to be able to be up enough to be able to work on the conditioning thing. not as a total fix, but as an added help. hang in there, :-)melissa

Amy - i too applaud your intentions & efforts but would really encourage you to reconsider trying to donate. for your sake - and please don't take this the wrong way - i am actually glad that your screening kept you from being able to do so. for me - pre-diagnosis - i donated my senior year of high school, passing the screening with no problems whatsoever, and soon thereafter was a mess. the next few days were a blur & i likely would have ended up having to go to the hospital if we hadn't had a great doc who is a neighbor who came to our house & treated me (with injections of ???) to help get me on my feet again. i'm sure it has happenned but i have yet to hear of someone with an autonomic issue who donated blood without paying dearly. i think there was a recent discussion about this but i can't seem to find it. here's one from a year or so ago though: http://dinet.ipbhost.com/index.php?showtopic=508&hl= regardless of this, your question about your hematocrit is another issue entirely. 36 is generally not a number that concerns a doctor; the donation guidelines are set up with a bit of leeway. so...if you're concerned i'd suggest bringing it up with your doc but i know for me it's taken far lower levels before docs were concerned. it's also common for women's levels to be lower during & right after their periods. and as is the case with anything, different people are just different. the fact that your levels have always been on the low side may just be how you are. i know others who are entirely healthy, great diets, athletes, etc. but can't donate b/c they can't seem to ever pass the screen...so you're not alone in this. maybe you could find a way to volunteer at a blood drive or make cookies for them? i too wish i could donate but know that for me it's just not an option... :-)melissa

hi blackwolf - it's good to "see" you checking in. i'm sorry things are still so rough. obviously i can't know exactly how you're feeling but i can relate to feeling like it never ends. i've had a rough week - a crash health wise & unbelievable craziness dealing with health-related stuff on the phone (wheelchair order, insurance issues, med records, docs, etc.), so i know how overwhelming things can feel. i'm glad you're getting on with the water PT...i know it can be slow going but it's still great that you're keeping going with it as every little bit helps. try not to be hard on yourself about limiting activities, missing church & the like...you need to do what you need to do to best take care of yourself right now. i know that doesn't make it easier but try to remind yourself that you're doing the best you can be for where you are right now. i hope things go well while your hubby is out of town. that you are able to enjoy the time to yourself & that no pressing problems arise while he's away. i don't know what variety of bladder trouble you're having but hope it gets better or that you're able to get some help in dealing with that soon. it's something that was added to my bag of fun this past year but i will say that, while not fun, it has been one of the easier of my symptoms to treat in the big scheme of things. i hope the same will be true for you. it's always good to hear from you. hang in there, :-)melissa

lol...i am cracking up envisioning the cats enjoying your attempt at pain relief b/c i can see my Czar doing the exact same thing. and yes, you've gotta love the conflicting advice from the docs about the neck brace...it seems to me though that as long as you're wearing it in a limited way, (which you obviously are seeing that it's been a year!) it's worth a go if there's a shot at some relief. i haven't had to use it recently but at times mine helped me tons long after i thought it would be of any use....and my surgery was much less of an event than yours. (you say you like baths...you're able to tolerate them okay BP wise? do you have trouble once you get out?) here's hoping you're able to get some good sleep tonight, :-)melissa

i like this thread! some of our names are more obvious but for those that aren't...good idea persephone! so....the makings of "sunfish": essentially it's a melding of my longtime nickname sunshine with my always being a bit of a fish & a newfound meaning of my fishness in terms of dysautonomia. i'll explain.... sunshine: my dad has called me sunshine since i was little. in college i rowed & one of my good buds started calling me sunshine b/c of my early morning (5am!) cheeriness combined with my bright yellow windbreaker. when she heard it had already been my nickname for years it stuck. fish: i've always been a fish of sorts. i was practically swimming on my own before i could walk and always loved the water. i swam for fun & competitively in any available water - pools, lakes, oceans - and followed that by years of lifeguarding (despite several blackouts on the job...er....probably not the best?) and coaching swim teams & teaching swim lessons to swimmers from 6 months old to 87 (yep, seriously). i kept up with the teaching/coaching on & off to some degree until this past winter when my body took its nosedive of sorts. in the water i often feel my best, which leads me to... the other meaning of my life as a fish. when i was diagnosed dr. grubb explained the water phenomenon to me, already knowing i was a swimmer. first of all when swimming i'm largely horizontal...never a bad thing. secondly the water provides compression around the entire body; it's similar to wearing hardcore support hose on the entire body. thus it helps with blood flow, circulation, etc. so...no surprise that i was happy in the water. we thus joked that i would be better off if only i had been born a fish so...over the years i came up with the "fish out of water" phrase as my mantra of sorts. and then living in baltimore, the city's "statue" project (like the cows & whatnot in various cities) was fish all over the place...how grand. and the project ended up being called "fish out of water"! oh...if only i had the copyright!! nonetheless, i did get myself a "fish out of water" t-shirt on clearance at the end of the fun. and when i write my book someday i've got my title. so i'm a fish out of water. my body isn't quite cut out for this landlife. but i'm sticking with the sunshine too. it keeps me going...i was in annie when little and still love "The Sun Will Come Out Tomorrow...." (lalalala ) and thus i'm a sunfish out of water. and that's a bit on the long side, so i'm a sunfish. that's my story and i'm stickin to it. :-)melissa the sunfish (better keep those shades on!)

coolio on the new wheels. i'm waiting for mine that i should have already had by now...the ordering got messed up & then they were going to try to make me pay extra for rush to get it before i move. i don't think so! so...i may be getting it as the moving van pulls out but they've assured me it will be here by next friday. it'd better be! i am SO conflicted about using the wheelchair though for orientation...once i know people i don't think i'll feel as weird but it's the whole meeting people initially thing, ya know? why do i have to think about it so much???????? :-)melissa

julie - welcome back! i'm sorry that your trip wasn't better than it was in terms of neuro-news, but also glad that it wasn't worse. sort of a double-edged coin & comment i realize, but like you titled your post it seems to go both ways. it's awesome that dr. h doesn't think you need to be pursuing the major surgery but obviously there are still tons of things you're dealing with & the other surgery on the nearer horizon. that said, though, it sounds like dr. h continues to be a good resource who is a straight-shooter who is both knowledgable & caring, which i know you & so many of us have come to dearly appreciate. sorry you had to deal with such cruddy traffic. my dad worked in chicago for the past two years or so & even as someone in the baltimore/dc area i couldn't imagine the traffic he put up with. of course it didn't help that he had to commute back to toledo but just within chicago it was insane. i'm just glad you made it home safely & didn't have any encounters with semis. about the ssdi, i know so many get denied initially so that doesn't surprise me, but the things in your file re: not having surgery & the like....that's totally nuts! sorry you have to keep fighting but glad you have a plan to move forward and that you realize it's the system and not you. hope you can get some rest now that you're home...your next "big event" is next week, right? :-)melissa

okay, this may be really lame, and i don't mean to insult your intelligence, but heat & ice do wonders for me in certain areas. i say certain areas b/c my extremities can't tolerate cold at all. but for behind the neck/back of the head pain ice does wonders for me if i'm laying down. and for other things heat seams to at least quell things a bit for me...i discovered this through unintentional placement of my laptop:-) again, i realize it's fairly lame but i figured i'd still put it out there...ya never know. hope you're feeling better soon, :-)melissa (who has also been hanging out in bed more than she'd like ever since the cleveland trip....grrrr)

ernie - i last saw dr. g last summer & in the years that i've seen him i've never been disappointed with the actual appointment with him. like others have said though i've definitely camped out at times. and for me, even when i've had to travel 1000miles roundtrip for the appointment, my parents live 10 minutes from MCO (now MUO) so i've always had home to fall back on (quite literally at times) before & after appointments. so...if i were you i don't know what i would do. at times i would have travelled any distance to see dr. g; at other times the cost of a trip like yours - finacially, emotionally, physiclaly, etc. - would have outweighed the benefit for me, such as at times i was more stable or had local docs who weren't ideal but were willing to work with me. it's definitely a tough decision and one that only you can make. dr. grubb is great but as we all know no one is magic (darn it!) and it is a huge trip for you. good luck with your decision...i'll understand & be behind you either way. :-)melissa

persephone- mestinon is a drug originally designed to treat myasthenia gravis but has recently been helpful to some (including me) for BP & other autonomic issues. there have been several discussions on it so you may want to do a search. two of the "bigger" threads are: http://dinet.ipbhost.com/index.php?showtop...792&hl=mestinon http://dinet.ipbhost.com/index.php?showtop...401&hl=mestinon a search for mestinon brought up four pages though so there's more where that came from! fyi, the generic name of the drug is pyridostigmine bromide; it's not a new drug but rather just on the newer end of things for autonomic issues. hope this helps, :-)melissa

thanks for the responses...one one hand i can say "yep, that's me" but on the other not at all. the PT says i have 5 of the 9 markers, i have moderate bruising/bleeding issues, i had MAJOR problems with traction several years back, have sprained my ankles more times than i can count & have problems with wound-healing skin-wise. but on the other hand i had an uneventful recovery from cervical spine surgery a few years ago and while i have some weird pains here & there i don't consider them my primary issue health wise, i.e. i've hardly mentioned them to docs at all. i actually went for this PT eval at the suggestion of an autonomic doc who has seen some correlations between movement restrictions & autonomic dysfunction (&/or CFS). he knows this PT well so thought it would be worth my while to have the eval before i move to know if it would be something worth pursuing at my new locale. other than as expected around my cervical fusion though no restrictions for me. and being told i have horrible posture. so...that's how the hypermobility thing came up. he was actually looking for restrictions and found the opposite...in an odd way it was a bit funny. so...i think for now i'll just keep it in mind and deal with it as the need arises... thanks again, :-)melissa

hi all- i've recently been told for the first time that i appear to be hypermobile, possibly have EDS, etc. it's never come up in the past b/c docs have asked me if i am hypermobile & i've said no as i didn't realize i was...i've always been this way. the PT i just started seeing though who has some knowledge of autonomic issues actually did a bunch of tests as a part of my eval & said i have a lot of the markers. i've perused various links & know the EDS basics but my question is this...in the sort term, is there any reason/merit to my getting a more definitive diagnosis one way or the other. granted i'm always interested to learn more about the whys of my body's craziness, but unless i'm missing something there's nothing drastic that's going to occur if i have this new diagnosis to add to my list. am i on the right page here? any reason why i can't just let this go for now & mention it to any relevant docs as i see them in due course? thanks! :-)melissa

jenn- i can't even imagine your frustration....i think i would have burst! it so saddens me that situations like this arise, particularly at a place where so many seek out guidance for autonomic issues. i second the patient advocate suggestion...some on the forum have gotten decent responses from various centers/hospitals & while it doesn't erase the icky experience it's something. i am so thankful that your husband was with you & is behind you all the way. and yes, i find the hydration directives, or rather contradictions, VERY confusing. hoping you get some better direction soon. keep on keepin on, :-)melissa

persephone - thanks for your message. i've definitely felt the same reading some of your posts - that i could have written them myself, too:-) good luck with your wheelchair trip. i'm really lucky in that most all of my courses are housed in one building, along with my department's library, offices, etc. so the toughest part is when i have to get elsewhere, for instance the bookstore, disability office, ID registration, parking office, etc....i may have to be a bit more creative with those things. my other big delimma is some of the where & when of using my wheelchair. some times are going to be clear-cut but others are more vague & i may not know what's best until i'm there, at which case it's sort of too late, ya know? i'm thinking it's going to be weird for folks to see me in a wheelchair some & out some until i get to know them....their problem, not mine, i know, but i still think about those things. for instance there is this dean's reception during orientation that i'm already in a quandry about. i sort of would rather meet people not in the chair but at the same time it would be rotten to go & have it be everyone 100% standing & me having to be an antisocial goof sitting in the corner. and thus i may have just answered my own question. i'm just not over this wheelchair thing yet i suppose even though in theory i'm excited about it letting me do some things that i otherwise wouldn't be able to do. same for my field placement...it's accessible but it's going to be hard to figure out when i need to use my chair b/c i won't always know what i'll be doing for the day ahead of time, i.e. shadowing a doc versus sitting in an office. i may try to ask for a rough outline but it will likely only be possible to a degree... as for what i'm studying, i'll be getting my masters in social work with my concentration being health/medical social work. a bit different than beowolf but i'm sure we'll still have a lot of things in common venturing through the school terrain come fall. my program starts the end of august. we'll definitely have to keep tabs on each other! :-)melissa

diana - i hear what you're saying & think it's a good point/reminder for folks to remember to share the good with the bad. there can be a tendency for people to "disappear" when doing better, though i have noticed it less on this board than on others i've participated in. i know i was guilty of just that when i had a good amount of time symptom & med free(on another board)...i still was a heavy drinking & salt-intaker, but this was pretty second nature & not a hassle at all. i do know of a good number of people who have problems in adolescence & then "outgrow" them entirely as they enter adulthood. and like already mentioned, there are many who are not necessarily 100% but who are pretty darn good. to me that's encouraging in and of itself. perhaps more so for those of us who have underlying issues that we know contribute if not cause the autonomic issues, as total recovery may not be as realistic & thus may seem like pie in the sky. for me it's just as exciting to read of folks who have taken great strides despite still dealing with some aspect of things. i think we all realize though that there is a LOT that no one understands with these disorders...including the recovery aspect. if anyone discovers all of the magic answers don't forget to let us know! :-)melissa

hi diana - i don't think i've said "hello" before (and if i have my memory is failing me), so welcome! there's definitely a lot of great info here - in the spots nina mentioned & throughout the forum. i have POTS & NCS (amongst other things) but not the hyperadrenergic type, but still wanted to encourage you that there are A LOT of different options treatment wise. it can take a lot of trial & error, patience & perserverence, and what works at one point for you may not work at another, but there ARE options. hang in there & hope you find something to bring you some relief soon, :-)melissa

hi linda - i don't think (although i'm not sure & just don't have it in me right now to go search through my records) that i've ever had issues with bilirubin, but i definitely have had issues with my gallbladder. i had mine removed this past spring as it wasn't doing me much good & was causing problems to boot. and i know at least 2 others on the forum & 1 friend who isn't on the forum (but could be) have had theirs removed too, and there are likely more. you may want to do a search although i think a lot of the discussions have occurred within the context of other GI issues too. i just searched for gallbladder & came up with a good three pages but i'm sure some are more applicable than others. personally i didn't have the "classic" gallbladder symptoms in terms of attacks but did have major issues keeping anything & everything down, even boosts/ensures & did have pain in what could be the right location. i didn't have gallstones though & my ultrasound only showed a lot of "sludge" which is a pretty vague finding. a normal ultrasound doesn't ensure a normal gallbladder though...the test that revealed my issues was a hydascan which, in short, measures the functioning of the gallbladder rather than just what is/isn't there. depending on who you talk to a normal ejection fraction is around 30%; mine was 8%. we knew it wasn't a guarantee but i was in pretty bad shape so i figured i didn't have a lot to loose. and out came my gallbladder. it was a rough ride but on the other end i'm glad i did it. it definitely didn't alleviate my GI issues but it alleviated some of them...i still have gastroparesis & overall slow motility but a bit after the surgery i could at least tolerate boosts/ensures rather than only clear fluids. and i no longer had the sharp stabbing pains. i was still getting sick every few days until we figured out how to deal with the gastroparesis, but it was a step in the right direction. sorry to have sort of jumped ahead with the gallbladder removal thing....primarily i just wanted to bring up the fact that the ultrasound is a starting point but not the only test out there. and in terms of a possible relationship with autonomic issues, the hydascan is actually the one more likely to show a problem. good luck & let us know how things proceed, :-)melissa

perhaps it's a bit sad, but i'm not surprised by anything anymore. i just wouldn't have the energy for all the shocks! (both good & bad). i know we've had lots of "roundtable" discussion about the endo stuff already but just wanted to send you good wishes for your appointment. i hope that it at least helps clarify some bit of things for you. i'll look forward to hearing how it goes. my follow-up with my endo is friday so i'll be hitting him with all my many questions then. congrats on your perserverence, :-)melissa

for me hydration, salt intake, & my meds have a lot of impact on my exhaustion level. if i'm even a bit off in terms of fluid intake my body totally rebels in terms of fatigue. also, if i've pushed to much i can pay for it for quite awhile afterward. the current heat can be a HUGE energy zapper as well...for anyone & even that much more for those of us who are sensitive to it. regarding exercise/working out, i by no means want to discourage your efforts & combatting deconditioning is SO important as it can only make things worse, BUT...the fact that you say you're crashing after work outs may be a clue that you're pushing a bit too much, which can have the opposite effect. as someone who for years was used to being able to plan out a training/work out schedule & did it no matter what with the philosophy that more was better, i KNOW how tough it is to take a different approach. you may want to do a search on exercise & read some of the past discussions to get a feel for different folks' experiences, but too much - even if it seems like not much at all - can be a negative for POTS folks. and the day-to-day variance can be a big factor too...often it's a trial & error game of figuring out what works for you, knowing & realizing that it can change on a daily basis. good luck, :-)melissa

thanks so much for the added encouragement. i really need it right now as i've crashed majorly since getting back & am super frustrated, never mind a bit anxious seeing that my move is a week from saturday & i'm pretty much down for the count at the moment. on a better note, i got a phone call on monday from my field advisor to tell me that i got the field placement i really wanted. it's at a community health center & i just had a really good feeling about it with the guy i interviewed with, both in regard to the placement itself & in regard to his response to my health issues (which i had to bring up even sooner than i'd planned in our conversation as he started a long conversation with me standing & i simply couldn't). i know that 5 of us interviewed for the one spot so while i don't know if it was other students' first choice i am still pretty psyched to have gotten it. em- thanks for the reassurance about getting what i need apartment-wise. it's stuff that i know but still struggle with, ya know? and also for your words re: it being okay no matter what happens. even though i did pretty darn well last week i'm starting to wonder since i'm crashing so after-the-fact...so as hard as it is to think about, it's good to be reminded that somehow things will work out regardless... steph- thanks for the welcome back to the buckeye state...and hey, if you're up for cleaning, we might be able to work something out. i'm waiting to win the lottery of course, which is oh so likely seeing that i don't play, so you wouldn't get rich, but i'd come up with something!:-) regardless, maybe we'll be able to meet someday since we'll be pretty close.... that's wild about OUs lack of access. at least once i got to it the building at Case was accessible... i may have said this to you before, but i knew lots of folks at OU while you were there (from high school)...wouldn't surprise me if we have some mutual acquaintences! thanks again gals, :-)melissa