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Sunfish

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  1. hello - so sorry that you're dealing with such an elevated degree of anxiety, panic attacks, etc. it must be horrible. while i don't disagree that, for some, dysautonomia symptoms may be a trigger for &/or be very intertwined with anxiety issues, i also want to point out that this is NOT always the case. despite having very severe autonomic dysfunction (progressive neuropathy/ failure) i am thankful that i have never dealt with any degree of elevated anxiety, have never had a panic attack, etc. like tearose wrote about, the story of my life also includes having to be very prepared, & i very much miss the ability to not have to "worry" about the conditions of something i might want to try to do/ participate in, such as if a place is wheelchair accessible (amongst other things). i also don't enjoy the fact that i never know whether i will be able to keep plans i might have b/c i don't know if my body/ health with cooperate; physically-speaking i am very undependable so i suppose that one could say i have to "worry" about that. and if i allow myself to i could easily get caught up in a million & one "what ifs" that are the reality known as my life...what if i get another infection, what if i'm out somewhere & get very ill, what if my IV pump starts beeping in the middle of a quiet church service, what if my J tube dressing comes loose & my clothes become drenched & smelly on one of the rare times that i'm dressed to the nine, what if my drainage bag breaks & grossly spills when i'm in public in a way that is indescribably embarrassing, what if i beat all the odds & live to retirement age & don't have a penny to my name. most of these things have happened to me more times than i can even remember (all of them but the "living to retirement) & i am sure that i could drive myself absolutely nuts thinking about the possibility of when &/or if any or all of them will happen next, as well as a myriad of other "what ifs" that would be easy to come up with, but i suppose i'm lucky that i'm hard-circuited not to think this way. this doesn't mean that such things never cross my mind, & i have also made the conscious decision to not let myself live a life of "what ifs" b/c it simply won't accomplish anything positive. i can be as prepared as possible & do what i can to prevent/ reduce such unwanted occurrences, but some will still happen & i have to do my best to deal with them in the best way i can. but all that said, i'm pretty sure that this reality of having to be prepared & having an inordinate number of unknowns as a part of your life isn't what you are really talking about. so...with all that said, i hope i'm not making you feel worse as that is NOT my intention! my point in writing what i have written is that i want to stress to you is that how you're feeling is NOT something that has to go along with dysautonomia for you. while your health issues may very well be a huge trigger for you, may have been what caused the onset of your anxiety/ panic issues, etc, you do NOT have to keep feeling the way you are. lina mentioned how helpful it was for her to get a psychiatrist involved in her care & she is not the only one on the board who has found this to be helpful. while there may be a reason that one might be better for you than another, seeing a psychiatrist, psychologist, or counselor (or some combination of the above) sounds like something that would be a really good idea for you as one step toward feeling more in control of your life. many people with chronic &/or serious illness find it helpful to see a counselor of some type to help deal with living a life with illness; i know i have found this helpful in the past as a way of having a "safe place" to vent where i don't have to worry about hurting feelings or monopolizing a relationship in the way that might be an issue with family or friends. while your anxiety/ issues may never totally disappear i am certain that they don't have to be as much of a hindrance in your life as they are now....having a chronic illness is hard enough without dealing with such uncontrolled anxiety, so i really want to encourage you to do whatever you can & get any help you can in any way that you can. & if you see one person & it's not a good fit then see someone else...i know it can be hard to do that given the limited energies off less-than-ideal health, but you owe it to yourself. i would just hate for you to think that the degree of anxiety & panic you're currently dealing with is & as to be "part of dysautonomia" to the degree that you accept it as something that can't be any other way. you CAN feel more at ease despite the all the unexpected things that come with a life of illness. take care, melissa
  2. good luck! i hope that the trip is uneventful & that the appointment is a good one! melissa
  3. hi jennifer (i don't know if i've ever seen you sign your name before...or else it hasn't registered for me!)- glad to hear that, all in all, your vandy trip/ visit was a positive. i know it can be frustrating too when the answers we get only lead to more questions, but in light of that reality i applaud you for your ability to appreciate what you DID gain in information/ diagnosis/ understanding from your vandy visit. having read thousands of posts on the forum over the years many people aren't able to to that (pull out the good/ positive aspects of appointments/ situations when they're not 100% great/ answer-filled). when i was a research patient at vandy some years back i too saw dr. b & we (my parents & i) also found him to be quite willing to have thorough discussions with me/us (including putting up with LOTS of questions!) and at the same time able to acknowledge that he/they don't have all the answers. since i was there for 2 weeks i/ we met & worked with some of the other doctors/ nurses/ research team as well & while they were each a bit different they all shared these valuable characteristics (ability/ willingness to discuss/ converse at length & ability to acknowledge that for all the answers there remained just as many unanswered questions). i wish you all the best both in your "conditioning plan" over the next 6 months or so as well as any/ all upcoming appointments & discussions you will have with the 3 endos. while i of course hope that you & they are able to come up with some answers (which will hopefully bring with them treatments/ solutions!), first & foremost i hope that all three are willing & able to work with you in a way that is helpful & appreciative of your situation, perhaps even communicating with one another &/or with your other physicians in a way that will best allow for as much understanding as there can possibly be for you 7 your health, as well as direction for treatment(s) & more relief from symptoms than you could even hope for or imagine! let us know how things evolve as you continue on your journey..... susan - having been to vandy myself & also knowing a bit of sara's situation, without wanting to turn you off to looking into vandy entirely i will tell you that, at times, the fact that it is very much focused on research can & does limit them from dealing with more out-of-the-box/ unique situations....at least as far as research in & of itself is concerned. this by no means means that they might not be helpful in an outpatient capacity, as you are significantly closer to them than i have ever been (from any of my habitations over the past number of years). not all that long after i spent time there as a research patient, though, they were quite direct with me that i was being removed from their research database(s) due to my health situation being too far removed from their criteria for more typical dysautonomia research patients....part of the whole concept of needing similar patients for comparison sake, yadda yadda, & - surprise surprise - not enough (or any?) patients enough like me for there to be any comparison(s) done in the name of research. in short i was "too sick/ complex" for any of their research studies anymore. that said, they never told me that i couldn't come back as an outpatient, though even in that realm they were fairly clear with me that they didn't have anything much to offer me. in other words they were happy to see me for whatever degree of check-in, medication adjustment, etc we might embark on, but all in all that never justified my/our traveling half way across the country for return visits. of course i also had other autonomic specialists involved in my care that were much closer to me & the folks at vandy knew that, so their comments colored by that reality. for what it's worth, even these many years later i'm still glad i went for the research patient gig. hope that sarah's managing at least decently since she's been home....i suppose i shouldn't inject too much of a tangent in the middle of firewatcher/ jennifer's post, but if you're up for an update elsewhere (either on the forum or in a PM/ email), i'd love to hear how she's managing without her port, if the fevers have stayed away, etc. she (& all of you) continue to be in my thoughts & prayers.... melissa
  4. oh yeah...how could i have forgotten to mention your precious canine companion in my earlier reply?! such a testimony/ illustration to how the animals in our lives often "get it" sooner &/or better than some of the people. i know my kitty (who everyone swears is actually part dog) is always the first one to know when i'm not doing well....sometimes even before i know myself! melissa
  5. wow....that was REALLY poignant. it's simplicity & "to-the-point" nature, combined with your grace & ability to give accurate detailed information in a way that informs & explains without overwhelming makes/made it a really good & informative clip. the graphic illustration - combined with the fact that your HR response to standing is so textbook (something that's not the case with every individual) - is great too. i remember when i was a research patient at vandy being able to see on a continual basis the dramatic HR (& for me BP) changes with changes in my position was very interesting and, i suppose in a way, validating. and while my parents didn't have doubts about my diagnosis/ health issues/ symptoms by then, i think it helped to further illustrate to them what was going on in my body pretty much every minute of every day as my changes were almost as dramatic even with "just" sitting upright from lying down, & then more so with standing (until i would at times pass out that is ). along the lines of which i will say that i noticed your recognizable - to those of us who "get it" at least - putting your legs/ feet up & even leaning over a bit as opposed to sitting straight up when you were "seated". that's probably the one thing that, if you were to ever redo your video, might be worth pointing out to those who are watching it for educational purposes, as i'm guessing your "sitting" position was/ is not an accident & in fact makes a big different in how you feel. that said it is great as it is so certainly does NOT need to be redone; i really was/ am very impressed & could truly see your presentation as one that could be helpful not only to patients' family & friends but also to less-informed medical professionals (&/or professionals-to-be, i.e. med/ nursing students). and i'll be honest that i'm generally one who critiques pretty heavily, i.e. i don't hand out complements all that lightly . since i'm no longer a member of "club POTS" so-to-speak & thus have a lot of other things that need explaining beyond orthostatic intolerance &/or heart rate variation (as well as less consistency in the direction with which my heart rate varies), if i were still a fellow POTSie i'd be seeing how to make/ get a copy of your snippet to share with many of those in my life. that said, with your permission (although i suppose it being on youtube sort of implies the okay to share?!) i may still want to share it with a few people i know who might find it helpful (and who aren't members of DINET). so...kudos & thanks for sharing. and by the way, while i KNOW that it has absolutely NO bearing on how you feel at any point in time, you're quite beautiful . and it's always nice to put a name with a face. melissa
  6. i've written about my experience with it extensively in more than one past post/ discussion so second the recommendation to do a search. that said, i will reiterate the fact that, for me & my particular situation, mestinon actually helped me to stop a downward cycle of unwanted weight loss (over 30lbs) & start gaining back a bit of weight that i needed. i can see how it would do the opposite for some people but in my case i was reaching the point of needing a feeding tube due to the degree of my gastroparesis & the accompanying weight loss. b/c one secondary affect of mestinon is increased GI motility, in my case this helped my gastroparesis & in turn my appetite, ability to drink/ eat more, etc. for me a HUGE blessing, & while it helped my orthostatic issues some the GI benefits were even more incredible. in short the GI problems that some have were the best thing that could have happened at the time for me as i was in desperate need for the speeding up of stomach & intestinal activity, something that is felt as stomach upset (as well as diarrhea & cramping at times) by some. i was started on mestinon when an inpatient research patient at vanderbilt some years ago now. while, as i've mentioned, it definitely was a good thing for me then i'm less certain that it does much of anything for me any more. might my GI situation be worse without it? perhaps, but it's hard to be a lot worse than no ability to eat or drink, continual GI drainage, & total need for IV hydration & nutrition. on the off chance that i would have more nausea/ vomiting without it though i'll be grateful for anything it might still be doing in the GI department. it's more likely that it might still be helping a bit with my orthostatic issues, perhaps even more than at times in the past as i now absorb more of it via administration via my J tube (directly into my intestines). so...while we have considered stopping for a bit to test how much it's helping, for now we've opted to let it be rather than rock the precarious boat of the slight bit of stability i have at the moment health wise (relatively speaking). over the years i have heard many reports of folks trying mestinon & they've ranged from great success to no effect (good or bad) to a few instances of side effects that rendered it something that wasn't worth continuing; all in all though i could say the exact same thing about just about every drug out there! one good thing about mestinon, should you have a problem of any sort, is that the half-life (time it stays in your system) is relatively short so that any unwanted problems won't last all that long. that said, many people have had varying degrees of success with it either alone or in combination with other meds so there is good reason to hope & expect that you will be one of them. hope this helps & good luck! melissa
  7. the fact that you have nerve damage in your feet does NOT in ANY way mean that your dysautonomia/ autonomic neuropathy is progressive. and as for worst case scenario, for what it's worth i've been told that i'm it. at least in the realm of someone my age (28) as opposed to a middle-aged person with MSA/ shy-drager. that said i'm a bit "better" now, at least functionally, that i was for a good year & a half (about a year & a half ago), at which point i very seriously was not expected to live another year. my prognosis is still poor & without the machines i'm attached to almost 24/7 i wouldn't live more than a few weeks at most. for more of my story here's my profile in the summer 2007 newsletter:http://www.dinet.org/summer07/sum07news3.htm. i have seen & been discussed & studied by many of the top autonomic specialists in the country & been told that collectively they have seen less than a handful of people with my severity of autonomic neuropathy/ failure/ degeneration/ etc. so that's what i'm basing my answer on (re: my being the "worst case scenario). as i said though i've sort of surprised everyone by my stubbornness in terms of the fact that i'm not only "just" still here but functioning at a better place than anyone ever thought i would be ever again. "better" is all relative & most people would consider my level of functioning absolutely horrible, but compared to being bedridden, living in hospitals & nursing homes most of the time, & needing ambulance transport to get me to a doctor's appointment, being able to get out of the house a few times a week in a good week is HUGE & not something i dare to not appreciate. but anyway.....based on what you've shared you have no reason to worry about your situation being progressive. many, if not most, people with autonomic neuropathy have some sensory issues similar to yours. that doesn't mean they aren't a huge pain but they certainly aren't indicative of a particularly poor or progressive prognosis. even more reassuring of that in your case is the fact that your other autonomic testing is all fairly okay. in anyone (me included) with a very progressive situation most if not all autonomic testing is dramatically abnormal, so for multiple reasons i'd say you can rest easy! hope this helps, melissa
  8. i hear you 500% on missing the simpler days of just falling into bed. in fact i'm still jealous of your routine as it's light years simpler than mine (which by no mean is to say it doesn't still royally stink for you!) my mandatory before-bed medical routine is almost 2 hours long 6 days a week & 3-4 hrs the other day....filled with IVs, dressing changes, tube-related care, meds via my J tube, etc. believe it or not i have actually had dreams about the simple blessing of being able to take a pill by mouth. not being able to just fall into bed at the end of my day is one of the simple pleasures that i most miss, and one that i'm not likely to ever get back, with the possible exception of being able to eliminate some of my maintenance/ care routine if/when i move to a place of palliative/ hospice care someday & thus chuck some of my more aggressive interventions...but even then there will still be some things that have to be done for the mere sake of day-to-day living & comfort. i've tried to make the most of my forced evening routine by splurging on a nice TV/ DVD set-up in my room so that i can watch movies or TV while i'm going through the drudgery but that's little consolation at times. and more than once i have fallen asleep before or in the middle of my routine only to wake up in the middle of the night/ morning having to do what i can to do what needs to be done &, at times, falling miserably short wherein i pay dearly the next day. so yep...i definitely empathize with the desire (& inability) to hit the pillow at night without any consideration for med schedules or other assorted medical do-dads (of which i have WAY too large a collection surrounding my bed). for me it's one of those mixed blessings. i'm thankful to have the stuff b/c without it i wouldn't be here, but there are days/ hours/ moments when i am VERY tempted to chuck it all (or at least parts of it!) right out the window! ah well... melissa
  9. the fact that you're on beta blockers - even if a small dose that doesn't seem to have a huge effect on your HR - could be a HUGE factor in the fact that your HR doesn't elevate with postural changes.
  10. as many others have said in various ways, ERs are truly not designed for those with POTS or most other day-to-days issues related to any of the many types of autonomic dysfunction. in my pre-diagnosis & early diagnosis years i too had my fair share of ER visits, many against my will when i would full-out faint (i was 17 & away a college so legally couldn't refuse even when i came to), etc. i know what it's like to deal with docs who have no clue what's going on & can empathize with all who have been belittled. but that said it has been many many years since i've gone to an ER for something related to dizziness, fainting, feeling cruddy, etc. and in all reality ERs are not intended to deal with any type of chronic illness, so it's not only POTS, NCS, syncope, dizziness, etc that they're ill-equiped for. without wanting to offend anyone, nor keep anyone from an ER trip if/ when it's really necessary, ERs are not meant for management of day-to-day symptoms...no matter how frustrating they might be, no matter how much you might need/ want an answer, etc. they are meant for life &/or limb threatening situations & other like emergencies wherein, in theory, life or limb would be threatened if someone didn't go. now....of course i realize that many people have the fear that their life is truly in danger & go for that very reason, but one good guideline (most of the time) is if you've been dealing with a certain symptom repeatedly, there is very little chance that all of a sudden it will be dangerous when it never has been before. this is even more true if it's something that has been evaluated &/or discussed with a doctor. obviously there are exceptions to this rule, as there are to most rules, but i'm sure you get my point. i know that it can feel HORRIBLE to have any measure of the crazy symptoms that our crazy heart rates, blood pressures, nausea & vomiting, palpitations, etc. but more times than not they are NOT life-threatening. and at the risk of sounding glib, however much they might make you think that you feel like you're dying, i can assure you that they don't come close to really making you feel like that at all. if you were really on the cusp of dying you would know. i promise. i've been there for real & it makes all the other stuff pale in comparison. i know it's hard to think that you could feel worse but you can. i will spare you the blow-by-blow description of the "almost dying" feeling but trust me that, if you're really there, you will KNOW - as will any/everyone around you - that there is no choice but to call 911 asap...no passing go, no collecting $200, no time to even grab your essentials. drama aside, there are of course times where the ER can be a necessity, and these times can vary based on one's individual situation. for example, a short-term fever of 102 with shakes & chills, as miserable as it might be, doesn't necessitate an ER trip for most people, but if someone has just had surgery & the surgical site is looking bad or if someone has a central line or someone is a transplant patient or other specific things then the same scenario is almost always an autonomic ticket to the ER. that said, there are exceptions even to that, as i've had many a fever up to 104 without going to the ER. the details of my scenario with regard to that aren't important for this discussion; i'm just making the point that there are very few, if any, absolutes when it comes to "when to go to the ER". i'm lucky in that i have a medical care team that allows me to stay home when 99.9% of the population would be sent to the ER...for me a huge blessing b/c with all i've had going on at times many doctors would have had me in the ER (as well as admitted) for weeks & months on end (more so than i already was that is). on the other hand my doctors, family, & i knew that we were taking some risks in some of our decisions not to go that i would certainly never impose on anyone else; i/we decided that some degree of gambling with my health and even my life was a fair trade for the improved quality-of-life that came with my being at home rather than in the hospital more often than i already was. but really this isn't about me....i'm just giving examples. other than times that i have been ill enough to warrant direct admission to critical care or ICU there have been several other scenarios in recent years when i begrudgingly went to the ER, received necessary treatment, & given the particular circumstances don't regret having gone & would do so again (within the specific situation). two general categories that could prompt an ER trip in particular circumstances, though, might be the following: 1. IV fluids: while i have central IV lines now & am dependent on IV hydration/ nutrition day in & day out, for the years that i had serious GI issues but didn't yet have IVs of my own at home i generally had it set up via my treatment team to receive IV saline (& at times electrolytes) on an outpatient basis without going to the ER; that said there was one time right after moving hundreds of miles that i didn't have my new set-up in place & hadn't kept ANYTHING down in days. i tried to use an urgent care place rather than an ER but per their blood work my electrolytes were dangerously wacked out & couldn't be corrected by them in the hour they were still open so they all but forced me to the ER that was across the way; i'm stubborn but not stupid & i knew it was something i needed to do. so while i highly recommend anyone who can to set up a way to get IV fluids on an outpatient basis other than via the ER, there may be occasional times that it can't be avoided. 2. potential head injury: while the scenario that elicits my being concerned is MUCH more extreme now than it was years ago, there would still be certain signs & symptoms that i would say warrant ruling out a head injury after a fall/ faint that includes a head hit. many years ago i was convinced over & over again that any time i hit my head i "might have a concussion...you never know" despite the fact that knew darn well i was fine. over the years i learned that there was no need to be continuously scanned "just in case" & my doctors agreed with me, but are there scenarios that still might make getting checked out after a fall the logical (& smart) choice? of course. if there's bleeding involved (beyond a scratched knee , that is), cognitive disturbance after a hard knock on the head (that's different than one's "normal" post-syncope state of confusion), a fall that messed with one's neck/ spine (i.e. going head-first down a flight of stairs) wherein there's subsequent loss of feeling, etc. you get the idea. i hope i didn't offend anyone with some of my rather straightforward comments as that was definitely not my intent. ultimately i was just trying to stress that, regardless of how horrible it can feel to be on the side of the patient, ERs aren't the place to the answers that many might be seeking. E.M.'s post articulated this, as well as the preferred & more effective alternative, very well. that said, i would never want to be the one who keeps someone who really needs to be heading to an ER from making the trip b/c i've been the person who, as stubborn as i am, has held off going once or twice to the point that my hesitation almost killed me (though, if i'm honest, i knew long before that i should have been on my way). i suppose the old "better be safe than sorry" does technically hold true, but at the same time i think it needs to be handled with care as i think it may be used at times as an easy way out when in reality the real need is for better day-to-day management, understanding, & tolerance of symptoms that an ER simply won't & can't be of any help for. b/c while it's by far not the only thing wrong with our health-care system, the mis- &/or over-use of ERs is one component of things.... but i'll get down off of my soapbox & shut up now. promise. melissa
  11. well, i hate to be the bearer of bad news, but chances are great that your taking STD WILL in fact use your FMLA as well. while your employer DOES have the option of not counting STD days toward FMLA, in reality i've never heard of an employer not counting STD (or sick days or LTD for that matter) as FMLA. so while i can't say 100% it's a high likelihood & i wouldn't want to mislead you or have you caught offguard thinking otherwise. re: the "more than 5 days off" issue as it relates to STD, that's something that's very individual & specific to each company & their/ your STD policy so just b/c that was the guidline/ rule for me/ mine it does NOT mean that it's the time after which STD kicks in for you. another reason why it's a good idea to get a copy of the full STD policy, though the point (number of days) after which STD becomes an issues should be readily available information that is available to all employees at any time (& at the point of making decisions re: benefits) via your HR department &/or rep. while i'm of course sorry to hear that your health has been so tough as it relates to work, speaking from an objective viewpoint as it relates to the possibility of being approved for STD that actually bodes very well b/c, as i was saying in my earlier post, no one that knows you can turn around & say "but she's already healthy, working at the best of her abilities w/out health constraints, etc" as they know full well that you've been struggling. i hear what you're saying re: the concern about using your FMLA now so obviously that's another issues in & of itself, but looking "just" at the STD the fact that you've already been using your intermittent FMLA & whatnot speaks well for the STD being approved. last but not least, while obviously this is a decision that only you (with your family, doctor, etc) can make, all that you've said does push me to encourage you to do what you need to put your health & well-being first. i know (trust me, i've been there) how hard it is to make any sort of decision that could endanger your job in the future, i.e. using up your FMLA now & not having it for later, the little bit that you've shared makes it sound that if you keep pushing there's the chance that working might become an impossibility anyway such that, if there's anything you can do to take care of yourself in order to get to a better place health-wise why wouldn't you do it? i am NOT trying to be negative in regard to your not being able to continue working but am only trying to reflect back what i heard you saying via your reply. nor am i trying to minimize the difficulty of a choice that would "eat up" your FMLA. so if i sound harsh in any way no that it's only with good intention. you obviously have tough decisions to make in the midst of a situation that is full of details that aren't within your control. if i were you i'd probably do some fact finding (getting a copy of STD policy, finding out if STD & FMLA are counted/ used up concurrently, etc); it may or may not make your decision easier or harder but at least you'll be as informed as possible which, as least in my experience, tends to help in even the most difficult of situations.... hang in there & feel free to let me know if i can help in any way as you proceed (like if you need any help figuring out any of you STD policy if/ when you get it). and know that whatever decision, as long as you think it through (as you obviously are), will be okay and that, no matter how insurmountably difficult the situation seems that life will go on.... melissa
  12. i used STD several times during my short career in the full-time workforce & neither time was i ever given a problem aside from having to have the requisite paperwork turned in & the like. it's a bit different at different places of work, but as E.M. mentioned most all STD is paid through a third-party insurer rather than your actual employer so other than the "cost" of your not being there to do your work (obviously not to be minimized) the dollar-for-dollar cost is paid by a third party. there may be some exception to this somewhere but generally speaking if the employer is still paying the days off are still called "sick days"; the term "STD" in & of itself generally represents the transition to the third-party payer/ insurer. which may be something you already know/ knew &/or don't care about anyway. so moving on.... at my workplace anytime someone missed more than a week (5 days) of work in a row it automatically "became" STD leave, so under that context i was on STD twice. the first time i did know/ plan on doing so in advance; in my case i was having surgery (indirectly related to an injury from a fall down a flight of stairs due to syncope years before) & knew that i would be out of work 4-8 weeks per the surgeons' expectations & prognosis for my recovery. things went as planned & i was able to go back part time after 6 weeks & full time a week later or so. the way the STD worked at my office was that it couldn't be arranged/ approved in advance. obviously with a planned surgery i had let my boss, supervisor, colleagues, etc know what was going on so that i attempted to wrap up loose ends with things i was handling at work & whatnot, but the official STD approval couldn't happen until i actually missed my "more than 5 days". a bit odd, but the formal way things worked at my office & how i know it works at a good number of places. i don't remember the exact details but it entailed our (me or my mom aka caregiver post-surgery) keeping in touch with the HR rep at my office & when i was out past the 5 days paperwork was automatically sent to my home address for my doctor to fill out which i was readily able to get doen at my first follow-up appointment. having since done a LOT of disabilty-related paperwork over the years, not only for myself but for others, i can attest to the fact that it was pretty straight-forward, simple, painless, etc. obviously any paperwork is a pain to some degree, but all in all the STD stuff wasn't really too bad. and if i remember correctly the first several days (perhaps even weeks) of the STD was paid out, with the stipulation that they could technically take it back, even before they received any official paperwork from my physician(s). i never had any problem with approval, though of course surgery that's deemed necessary is one of the most clear-cut things out there, not to mention that having a neurosurgeon do all the paperwork, whether anyone wants to admit it or not, adds another level of validity to whatever's going on. so that was "use #1." the 2nd time i was on STD was unfortunately the beginning of the end of my working life. that time it wasn't planned so i unfortunately left many loose ends for my boss & fellow workers...obviously not the ideal, & not something i would have done had i had any choice in the matter. that time i was actually hospitalized emergently (in the middle of a work day at that) & while initially i only used a week or two of my STD & tried to return to work, in less than a week i was again hospitalized and while at that time i never anticipated that i would never be able to return to work "when i got better", that never came & my STD became LTD & here i am several years later. one thing that is worth pointing out from that part of my story is that despite my return to work for a short while after my first hospitalization (& several weeks off), when i had to leave again it fell under a specific time period that meant it was counted as a continuation as my initial STD leave rather than a new/ separate leave. different policies/ companies will have different specifics re: the number of days out, back at work, etc but what i'm getting at is that while people generally think of STD being used for one big chunk of time, many of the policies can also be used for several periods that all fall within a specified time range. not sure if this might be something that would be worth looking at for you somewhere along the line but thought i would mention it. along those lines i would HIGHLY SUGGEST that you get a copy of the ACTUAL POLICY for your STD policy. not the one-page description or the ten-page summary but the ENTIRE policy, which is probably hundreds of pages. you might get a bit of a run around before you can get your hands on it but you have a legal right to it & any hassle that anyone gives you is likely due to the fact that they don't know themselves where to get it & don't want to be bothered finding out &/or that they don't want to bother with copying or printing out that many pages or something else that, in the big scheme of things, doesn't matter at all. you really should have a copy. i've worked in the insurance field myself & there's no reason that everyone shouldn't have the full print-out of any & every policy you have, be it disability, health, car, etc. and best to have it BEFORE you really need it (i.e. are in the middle of filing a claim). just a friendly pointer to you & anyone else that might be reading.... one more thing worth mentioning is FMLA leave, which is likely to kick in for you if you use your STD. not everyone realizes it but your using STD leave doesn't mean that FMLA won't still kick in as well. i'll leave it at that for now but if you have any questions on that &/or how the two work together let me know. in addition to personal experience with their use (both myself & my mother as a caregiver for me) i have also done academic research on FMLA for graduate school so know more about it than anyone would ever want/ need! i'll be honest with you that i don't know how open/ easy STD will be in your situation. i certainly would encourage you to look into it - it's there for a reason - and it sounds like your doctor(s) is supportive of you taking the time off which is HUGE b/c it means that s/he will be much more likely to fill out the paperwork in a way that makes it much more likely for it to be approved...obviously not a guarantee but you'd be surprised how much difference that one factor makes. something else that might be looked at - though i'm not sure - is how much your illness has already affected your ability to work, i.e. have you had to miss work, get there late, etc? it's not a necessity but if there's "proof" - sick days you've had to use already, conversations with your boss/ supervisor re: difficulty making deadlines, getting to work late &/or leaving early, etc - that your health has hurt your ability to work in recent weeks/ months, it can't help the "argument" that making your health a priority is a worthwhile thing for them to take a chance on with the hope/ intent that giving it more attention in the short-term will make it less of a hindrance in the workplace moving forward. obviously we all know that there's no guarantee re: what the rehab/ time off will do for you health-wise, but it doesn't need to be a guarantee for it to still be a logical argument for the sake of STD coverage. if per chance your workplace has NO clue about your health situation/ struggles, you might want to make them aware of it now in a way that makes them - or at least your supervisor/ boss - aware of the affect your health is having on your ability to work &, as such, your value as their employee. if they don't know that you're having any trouble then they're less likely to be supportive of your taking leave to improve your health as they won't be aware that there's a problem that needs improving. hope this helps (& good luck with your decision!) melissa
  13. i don't take intentional doses throughout the night &/or while sleeping, but b/c i'm so dependent on it being in my system any time that i'm awake i do often have it in my system during several hours of sleeping. if that's confusing, i'll try for a better/ clearer explanation: i take midodrine every 4-4.5 hours. without it i might as well be flat on the floor (which isn't to say that i'm not still that even with it, but that's another issue altogether... ). so let's say that it's 10pm & i'm not ready to go to sleep yet, that i still have to finish my medical to-do list for the night (IVs, dressing changes, etc), put my PJs on, brush my teeth, etc and my last dose of midodrine was at 5:30 such that i'm at the tail end of my 4.5hr maximum dosing window, i'll take another dose without second thought. all of my docs are fine with this & always have been, despite the fact that i might then be heading to sleep between 11 & 12, only an hour or two into what's at least a 4 hr dose. additionally, at times when i haven't even been able to sit up to use a bedside commode without having midodrine in my system, if i would wake up in the middle of the night having to use the toilet i would have to take a dose of midodrine & then wait 25-30 minutes for it to "kick in" before being able to go to the bathroom. so in those ways i have taken my midodrine at night &/or before/ during sleeping on many occasions. at times when my daily schedule has included a daily 2hr nap (or more) i've always taken my midodrine straight through as well. and i've been told to take &/or been given my midodrine before various procedures &/or operations where i would obviously be lying down &, albeit unnaturally, "sleeping" as well. so, all in all i've used midodrine while sleeping in a wide variety of realms for many years and, all that said, i've never had any trouble doing so. i did have a few months this past year where my BP decided to be higher for a while but during that time we cut my midodrine altogether such that that's really unrelated to what you're asking here. for what you're asking here my answer is that i've never had any trouble with taking midodrine before/ during sleeping, lying flat, etc. while it's not bad that you're paying attention to new medication changes, i would encourage you - short of a side effect that might be deemed dangerous - to not jump to any conclusions after only one night (much as you yourself mentioned re: it being the first night). unless last night's poor sleep included something drastic going on physically that you didn't mention in your post it seem that it would be reasonable to give it a few more nights before associating the poor sleep with the midodrine. good luck (& better sleep!) melissa
  14. i always have been & always will be an extrovert. this doesn't diminish, negate, or presuppose the reality that my illness & disability has DRASTICALLY changed the appearance & reality of my day-to-day life. someone who doesn't know me might easily look at my day-to-day "schedule" & deem me an introvert, but anyone who knows me well knows i still thrive on interaction with others. due to some very singular life realities that i share with very few others (not by choice, but b/c very few people are in the same situation), there are most certainly times & situations that bring out the introvert in me, but when it gets right down to it i'm still a "people person"...an extrovert. i'm an extrovert to the point that i will pay a HUGE cost to spend time with people even if it means days in bed afterward. i'm sure you get my point by now. quite honestly i've never been a fan of the classifications b/c, as much as i clearly fall in the "extrovert" category, i'm also someone who absolutely NEEDS my "me time". i always have & guess that i always will. while it may not define my personality to the degree that "extrovert"-ness does, i would say that i am JUST as dependent on it. i crave it & need it, particularly if my "people time" hasn't included any sort of deep conversation/ introspection. which, i suppose, may be the crux of it. unfortunately over the years i've come to find that many extrovert-centered activities don't include depth of conversation or relationship. being superficial is just as much NOT who i am as any other part about me. more than needing "people time" or "me time" i need & crave & thrive on the deep conversation, introspective living, etc. i am an intense person who lives intensely & has a hard time with the fact that much of the world does not. on any type or variety of personality testing - you know the ones with scales ranking extrovert & introvert, amongst other things? - i always score on the extrovert (or other applicable term of similar meaning) side of the spectrum but always pretty darn close to the middle/ center, such that my introvert side (or again, whatever similar term is being used) is also very high scoring. in fact i tend to be very close to the middle on/ in any categories used, even those related to other things, which has always seemed to be a good fit both to me & others around me who know me well in one or more realms of living. just an added tidbit of melissa i suppose.... i'm sure some of you reading this would suppose that my intensity is a direct result of my health situation, my brushes with death, etc. but it's not. has that brought it out even more? heightened its intensity? how could it have not, right? of course. i wouldn't argue with that for a second. but it's not where it started. b/c long before i had any health issues, much less anything that could be considered life-threatening or terminal, i was an intense person. at times, almost to a fault. b/c, as i mentioned already, much (if not most) of the world, doesn't operate on the level that i love & crave. at times i've taken it personally when others don't want this level of relationship &/or conversation when, in reality, it's just that many people don't desire the level of relationship with anyone that i like to have to everyone (well, not EVERYone, but you get my drift). so how's that for a long convoluted answer? and while i definitely see what you're saying tearose, and can say "me too" wholeheartedly about the reality of graciously learning to change the way we live & thrive in light of our physical realities, i differ on the opinion that there should be a different category b/c when it gets down to it you're talking about adapting to your situation / reality despite not having changed who you really are, and the question is about our innate personality WITHOUT consideration of how our health situations/ realities might dictate our day-to-day living, ya know? at least that was/ is my interpretation of what is being asked.....that it's asking us what category we would fall in if we didn't have any health constraints (allowing of course for the part of the question wherein our health has actually changed our innate operating systems/ personalities). anyone can feel free to correct me if i'm wrong. of course just my two cents...... melissa, the extrovert with a strong introvert side too (who has been some version of this same framework since the day i was born)
  15. without going into a lot of detail, i would hazard to guess that SOME people MIGHT be able to retrain SOME aspects of their misfiring/ wackily-wired ANS....things more along the lines of symptoms that, while physical, have an emotional component as well. tachycardia that corresponds directly with anxiety &/or emotional overload & some other things along those lines. but i think there are a LOT of limits such that this would be limited to a select few symptoms. i feel pretty strongly that this theory - however appealing - would NOT hold true for a large number of people &/or autonomic dysfunctions &/or symptoms. as one case in point, i have actual nerve damage - progressive deterioration to be exact - such that the nerves that comprise my autonomic nervous system throughout multiple body systems are pretty much gradually dying off. at the risk of people accusing me of being negative, no amount of "retraining" is going to change this physiological deterioration in my body. i'm not being negative. i'm dealing with my reality. i know that my situation is not the same as everyone else's & vis versa, but despite my situation being one of the more extreme/ severe, i'm sure that some (if not many) others are dealing with lesser degrees of the same thing, that is physiological processes that aren't "just" about a faulty response to stimuli. your main question re: response to stimuli is something i can't even relate to as it's something i've never even really dealt with; for lack of a better description, most if not all of my autonomic dysfunction (failure) is entirely internal rather than being an issue with external stimuli. i do realize, and by no means intend to diminish, the role that response to external stimuli may play for some people, but for those of us that don't deal with this as a primary (or even secondary) component of our ANS disorders/ dysfunctions, i think that the proposed theory/ "reconditioning" doesn't fit in any way other than perhaps ab ability to do the best one can with the underlying autonomic dysfunction. that is, i do think there's something to be said for doing one's best, in whatever way someone chooses to define it, with the reality of one's health situation. some of this can definitely involve some degree of controlling physical signs/ symptoms, some of which you specifically mentioned. so i suppose this could be framed as falling within the construct of "reconditioning". but in at least some (if not a good number of) situations, i don't think it's a way of coming anywhere close to fixing the core issue. last but not least, i know there has been some work done in the realm of biofeedback & autonomic dysfunction, most specifically in regard to BP &/or HR as you may have been referring to in your example(s). i have had some discussion(s) about it with some doctors along the way, most being top autonomic specialists, & they have all expressed quite clearly that it has some use in some individuals but that it also has a lot of limitations & is far from a cure for people, the exception being those with very mild ANS dysfunction that is almost exclusively triggered by anxiety &/or other (at least somewhat controllable) external environmental factors. upon inquiring about biofeedback for myself i have in fact been told that it wouldn't likely do anything for me, this being based on my specific situation. i'm happy to explain the "why" of this answer that i was given if someone really wants to know but it's a bit off the topic so i won't go into it any further here. i commend you for trying to think out of the box & do think that, for some people, it has some merit but unfortunately that, for many of us, is just doesn't make sense or fit within the construct of our illnesses/ health situations. just my two cents. i'm far from an expert on the subject but not exactly new to the world of dysautonomia either so in addition to "living it" am pretty familiar with the research that's been done, theories that doctors have on treatments, etc melissa
  16. re: insurance that's something that can really only be answered by vanderbilt. the contact info should be on the link i posted for you before. another thing to consider though is whether you are planning on going to the clinic as an outpatient or to the research center as an inpatient research patient. if you are a research patient then your own insurance only has to be willing to cover the first 24 hours or so of testing/ care, after which - if you are officially approved for the research protocol - all costs are covered by the research program at vandy (often funded through the national institute of health). obviously you still need to be concerned about the first day of coverage but it can at times allow people to access a level of care & testing that they wouldn't otherwise have coverage for. this info is several years old though so don't take it as the exact info that is accurate now. ultimately you need to talk to vanderbilt directly to see what there relationship is with medicare; it will also depend on what type of medicare you have...hospital coverage only or part B as well. hope this helps & good luck! melissa p.s. for my experience as a research patient several years ago do a search for "vanderbilt chronicles". i wrote a good amount about what it was like to be a patient there. some details of the specific tests might change as the research protocols are different at different times but it will still give you some relevant info. if you have trouble finding it, or other info on vandy that others have posted via a search on "vanderbilt" or "vandy" let us know. for some basic help on searching check out "helpful hints for forum participation" at the top of the forum. (direct link ishttp://dinet.ipbhost.com/index.php?showtopic=5555).
  17. hello & welcome (to joining in at least) - glad you decided to jump in to the discussion! (your sister's great so i'm sure you are too:-)...that is if i'm making the right guess re: whose sis you actually are (not that anyone else's sis wouldn't be nice too...i realized after typing that i sounded a bit not-so-nice there, eh?)but anyway..... based on your description your headaches sound like they might be more orthostatic-related than anything else...at least the everyday/ almost-all-the-time component. they sound similar to the "headache" that i get when i'm upright too much & need to get more reclined/ flat than i already am. i do have additional migraines on top of that at times that aren't positional, but the location of your headaches is the place that orthostatic/ positional headaches are most often for those who have them. along that train of thought, have you ever tracked your blood pressure when you have the headaches? specifically is there any trend of it being lower when the headaches are worse? that said, even if there's no connection they could still be positional/ orthostatic as your BP can be okay/ stable & the blood flow to your head/ neck/ brain still be less than it should be (thus creating the headache). as such, since beta blockers can in fact lower BP, i almost wonder if they are making things worse? while you said that they have helped with your POTS/ tachy, have the headaches gotten any worse since you've taken them? either the mild all-the-time type &/or the more severe spikes (for lack of a better description)? as part of you POTS treatment have you ever tried any meds that are designed to raise BP. if i were a doc (which i'm obviously not) i would really want to prescribe you something along that line - most likely midodrine but perhaps florinef or one of the meds in the ritalin family - b/c if the headache issue is at least partially positional/ orthostatic/ BP related then a bit of a boost in your BP could possibly make a huge difference. i know for me it's been an issue at time and, quite honestly, i don't know if i've ever heard someone else describe that one element of my symptom profile in a way that rings as true to what i've experienced. do you have a treating doc that might be willing to explore this with you....either autonomic-related, primary, or otherwise? that's all i've got to add at the moment. obviously i could be entirely off-base & wrong so take my enthusiasm with a grain of salt. regardless though i hope you find some answers & relief sooner rather than later. in the mean time hang in there the best you can! melissa p.s. if you ever get lost along the ohio roads & find yourself all the way NW (toledo area) it would be great to meet you!
  18. hi there - sorry for your doctor frustrations. many of us have had our fair share in one way or another so can definitely empathize. not fun at all. just briefly, one neuro in ohio who i have had good experiences with is Dr. Robert Shields. he is actually the director of the Autonomic Function Lab at Cleveland Clinic & i'm not sure why he's not on our list (it could be for a variety of reasons, none of which necessarily have anything to do with one's doctoring) i've written about my experiences with him several times, as have a few others, so you might want to do a search. if you can't find past posts let me know & i'll chime in a bit more. to be honest i can't guarantee that he's exactly what you're looking for b/c my needs/ situation was a bit different when i saw him. i had nothing but a good experience with him but obviously can't speak to how he would deal with your situation. based on my experience(s) with him i wouldn't rule him out though. hope this helps, melissa
  19. i have very dark circles around/ under my eyes which, in combination with very pale skin, makes me look like i've never gotten much sleep. i've never thought of my coloration as "brown" though so am not sure if you're dealing with something different? regarding how to cover things up, i have fallen in love with the bare minerals line of make-up over the past year. it's not as cheap as drug store stuff but lasts a good long while so really isn't too bad in the end. it doesn't take much time or effort & doesn't make you look "made up" but rather just a better version of you:-) i've gotten tons of complements & with some trial & error have figured out the routine that gets rid of my circles & gives me a bit of color, which is largely what i'm looking for. it's also pretty natural which never hurts, & hasn't bothered me at all as someone with super sensitive skin. i've gotten all of mine from sephora, mostly buying it online, but know there are other "as seen on TV" offers out there as well, though be aware that there is a scam going around with a similar "product" that i would hate for anyone to get mixed up in. if you'd like more info on the specific items i've fallen in love with let me know.... melissa
  20. congrats on getting the approval that you were hoping & fighting for! for me a hospital bed is one thing i've fought...was offered/ approved for it a year & a half ago or so but really didn't want it, & while it would have been helpful at one point then i'm glad i fought it as i don't need it so much now. i have an antique bed that i love so for me giving that up would be huge. while i would love to be able to convert my bed to something adjustable, in the midst of so much else in my life & room become "hospitalized" the bed is one thing i've fought off. for me it wouldn't make any different day-to-day in the way that it will for you...if that were the case i would probably have a much different opinion on the matter. i'm super happy for you that you've gotten what you were hoping for! congrats again! melissa
  21. first, after quickly glancing through your post as well as all of the replies, i just wanted to quickly reaffirm (as you mentioned in your initial post) that you can NOT split the 180 time release tablet. doing so will in fact mess with the time release formulation such that, on a minute-by-minute & hour-by-hour basis you will get MORE of a dose as opposed to less. this is the case with almost all time release medications and as such they should never be cut, split, crushed, etc in any way. when in doubt it's always a good idea to check with your pharmacist (just as you already did)...when it comes to manipulating pills they actually tend to be more knowledgeable than many physicians. moving on though to the bigger issues at hand i have several thoughts. i'll throw them all out & you can see if any stick.... i guess i'm not sure why your doctor is so opposed to your starting with a smaller dose? i can't tell from your post if you've brought up the issue directly or if it's just that you're certain that s/he is so adamant about your taking the 180 time release that you haven't bothered to address the issue? if you haven't done so i would certainly encourage you to do so as it certainly can't hurt. and the discussion, even if your doc doesn't budge, might help you to understand your doctor's position, i.e. if s/he tells you that s/he has had 200 patients similar to you and they have all needed at least the 180mg daily. i know it's unlikely that your doctor has that many patients similar to you but am just trying to make a point so hopefully you get the idea . since you mentioned that you're already planning on seeing another specialist in correlation with starting the mestinon b/c of you asthma, perhaps this person could be "on your side" so to speak in regard to starting with a lower dose? in saying this i'm assuming that your prescribing doc is on board with &/or behind the recommendation the see this additional doc, but if that's the case & this person then suggests, or at least supports, your starting at a lower dose with the hopes of working up to the 180mg dosing, then would your current/ prescribing doc not follow suit? while i don't think it's likely to be a concern, if it's presented as a "just to be safe" precaution related to your asthma/ breathing then i would think that your initial prescribing doc would be supportive? as i'm thinking out loud & writing this it seems that this might be the easiest approach to take? i've just reread your post to clarify (for me) the different doctors involved. seeing that your EP is the prescribing doc for the mestinon & the one who wants you to be on the 180mg time release i would, if you haven't done so already, at least try to see if s/he will let you try with a lower dose, making it clear that you will work up to the higher dose s/he wants you at as long as you don't have any problems. if it happens that this doc is someone that you can't readily get in &/or communicate with, that you see only every 6 months & can't get messages to/ from in between, etc, then i think it would be very reasonable to see if you PCP would write a Rx for a lower dose with the understanding that you will then work up to the 180. if your EP is someone who you can communicate with &/or get in to see fairly easily though then it's probably NOT a good idea to have your PCP write a script as it could be seen as going being the back of your EP. all in all my thoughts on getting your PCP involved are directly related to how things tend to operate with/ between you & your PCP & EP with issues/ meds in general & not just this one. hopefully this makes sense. one additional note about the mestinon, whether you decide to push for starting at a lower dose or go ahead & try the 180mg time release, is that in either form it is still a fairly short acting medication, meaning that if you don't do well with it you won't be stuck with it in your system for days on end. while it's obviously true that the extended release formulation will last longer than the regular short-acting type, even the extended release will be out of your system entirely in less than two days, with most of it out in a day. without looking it up i may be mistaken in which case it would be entirely out in a day and mostly out in 14-16 hours (i'm too lazy to check at the moment but don't recall whether the extended release mestinon is intended to cover a 12hr or a 24hr period). the standard formulation lasts 6-8hours & would be totally out of your system in probably about 12hrs or so (an estimate). i suppose the shorter half-life could be another "argument" for starting with a lower dose, or even the "same" dose broken into the short/standard release tablets, but all in all no matter what tablet you try none of the mestinon formulations have a long half life compared to many medications, something that's always a comforting thing when considering any possible side-effects of a new med. if you're not where you would like to be health wise, and it sounds like you're not, then i wouldn't wait on your appointment with dr. grubb before you make changes of some sort, whether it be the mestinon or something else. whatever change(s) you make may or may not help but if you don't try you won't know. changes don't always have to be medication as there are lifestyle things to try as well, but the things you're mentioning are things that dr. grubb is likely to bring up as well so the more you have already tried then you'll have that much more information to bring to your appointment to dr. grubb. b/c even if things don't work that in & of itself is information that may help shape what to do next. one thing to keep in mind is that it is generally most helpful to only make one change/ adjustment at a time, whether a medication change or something else; obviously there are exceptions to this rule, but in most instances it's the best way to identify what the specific thing is that is helping, hurting, or doing nothing at all. regarding your midodrine, you most likely have a decent amount of room before you reach the blood pressure numbers your doctor has given you as an upper limit. obviously we're all different & you're wise to be aware of your readings as you increase your dose, but it's very possible (fingers crossed!) that upping your dose will greatly improve how you're feeling. as others have mentioned midodrine IS a pill that can be split so you aren't limited to 5mg increments for your dosing either, something that might be helpful for you now or in the future. additionally it might be helpful to consider the possibility of taking different doses of midodrine at different types of day, though you would obviously want to discuss this with at least one of your doctors first. just as an example, i take a higher dose of midodrine first thing in the morning than i do for my subsequent doses during the day (15mg vs 10mg), though at times i add extra at other times as well depending on how i'm feeling (& related to my BP). i know i mentioned it earlier but if you're making changes to your midodrine doses it's probably a good idea to NOT make any other changes at the same time, including starting mestinon at any dose. that said, since midodrine has an even shorter half life than any form of mestinon, you wouldn't need to leave too much time between trying different "new things" in order to know what was doing what. to be fair you'd probably want at least a few days of your day-to-day life/ schedule with any new/ different treatment/ adjustment in order to account for the day-to-day differences in our bodies/ symptoms (aka it's hard to judge what anything is or isn't doing based on only one day), but unlike some meds (i.e. SSRIs) you don't need weeks or months to see how your body might be handling the new addition/ adjustment. last but not least i'll throw in my own experience & history with the meds at hand. i already reference my current midodrine dosing. for the most part i've taken varying doses of midodrine since first starting it almost 10 years ago; if you know anything about me you know that i'm far from "well" but if i had to pick one med that's been most indispensable to me over the years midodrine would probably win. mestinon, on the other hand, is one of the meds that i'm not as confident of as far as how much it helps me. i started it while a research patient at vanderbilt and, at that time, it definitely helped me GI-wise (in the same way that for some it causes unwanted GI side-effects) as well as, in combination with other meds, with orthostatic issues, which was objectively shown on testing at that time. i'm less sure of it helping with either any more but considering the instability of my health situation, since it's not hurting my docs & i haven't wanted to rock the boat. at some point we may decide to play around to see if it's still serving a purpose but for now i take it solely based on the fact that there was proof of its efficacy years back. for what it's worth my midodrine dose is 180mg daily. i cannot take the 180mg extended release formulation as all of my meds must be liquid or crushable (for J tube administration) so i take my dose via three 60mg (liquid) doses; if my GI issues didn't get in the way i would gladly take the once-daily 180mg version. let me know if you have any addition questions. good luck with your decisions, conversations with doctors, medication changes/ adjustments, & with juggling your job with FMLA the best you can (something i know is NOT easy). you can only do what you can do, so while it's often easier said than done try to not be too hard with yourself. hope this helps, melissa
  22. yes ken they definitely make them for men as well...in a variety of sizes, styles, etc. definitely get the prescription ones though rather than ones you might find behind the counter at walmart or the like. for me the 40-50mmHg compression doesn't seem to help any more than the 30-40mmHg variety but will definitely attest to the 30-40mmHg working much better for me than the 20-30mmHg variety so it makes sense that, at least for some, the 40-50mmHg might be that much better still; as with so many things we're all different. i definitely would NOT recommend starting with the 40-50mmHg waist highs though if you've never worn any type of support hose/ stockings at all. i don't think you need to start with the lowest variety either (i.e. 10-25mmHg), but b/c of some of the aforementioned issues related to comfort, ease/ difficulty putting them on, etc, starting with the absolute highest compression (40-50mmHg) would likely be pretty tough. i can't remember for certain as it was so many years ago but i think i started with 20-30mmHg & soon moved up to 30-40mmHg which. despite some issues requiring a break & some changes over the years, have continued to be a helpful addition to my treatment regimen over the years. due to my GI issues - not only a lack of tolerance to abdominal compression related to pain, bloating, reflux, etc. but in recent years also related to having both G & J tubes that get in the way - i can no longer wear waist high hose of any variety but have still found the thigh highs to be helpful. they're not AS good as waist highs objectively speaking but definitely much better than nothing (and still better than knee highs, which i would presume would themselves still be a bit better than nothing). i also have had some trouble with rashes & skin irritation from the hose at times...not sure if i've changed or it's the particular hose i had/ have or what but that doesn't seem to be as much of problem for me now as it once was. the duration & frequency of wearing them may be the key....when i had the problem i was wearing them for longer periods every day as i was still able to work. i think heat also played a role in the equation as rashes seemed to happen more often during summer months. we've had some discussions related to skin problems & hose in the past so i'll leave it at that for now; anyone who might be interested in further ramblings might want to do a search for past posts on the subject. getting back to the matter at hand though, i would encourage anyone considering hose/ stockings for the first time (or considering trying them again after a less-than-successful attempt) to make sure you get good, WELL-FITTED hose in order to truly give them a fair shot. they don't have to be the most expensive variety available in order to be well-fitted but the fit really is key. if you just buy the S/M/L variety off the shelf at the drug store it's really not a fair assessment of their value (or potential value). if you get the individually measured/ fitted variety & then want to see if you might be one of the lucky people for whom the S/M/L variety work just as well then you might luck out but they're not the best idea for a first try. while obviously having insurance coverage & getting measured/ fitted is the best/ ideal way to go about getting your first pair, there are other options if you don't have insurance coverage, most namely a couple of online vendors who carry the best brands as well as their own generic brands. these places (the good ones at least) have helpful customer service reps who are knowledgeable about the wide range of products available as well as their respective fits, prices, etc. and there are very detailed sizing charts available, either online or via mail or phone, that are specific to each particular brand of hose & will allow you (or the customer service rep) to essentially "fit you" very similarly to how the fitting specialist would if you were to go to a durable medical equipment & drugstore for a fitting in correlation with an insurance-covered (or pricier out-of-pocket) purchase. in the long run, by doing this you're much more likely to end up with hose that actually help you, and on the chance that they still end up not being something you like/ use you'll know that you gave it a genuine try. and with a bit of comparison shopping &/or recommendations from others you really won't have to spend too much more than the more generically fashioned over-the-counter variety from your local corner store. i promise. and once you're more of an expert wearer you'll know enough to stretch the limits of finding the best deals & the like. though you may also find that some "deals" aren't really that much of a deal in the end b/c some (not all) of the cheaper hose don't last half as long & thus have to be replaced twice as often which at the end of the day makes them the same, if not more expensive, than the "pricier" mid-range varieties might have been in the first place. so....all that to say i too am a big believer in WELL-FITTED compression hose. they don't have to be the priciest/ "best" ones out there but if they don't fit properly they won't help as much as they otherwise might and in all reality might even hurt (in terms of comfort but perhaps even in terms of causing problems with circulation, skin, etc). the higher compression the more trouble they might cause if they aren't the proper fit. hope this helps (and lecture over ), melissa
  23. while i've checked in no less than 30 times for updates i'm realizing now that i never actually posted my support, prayers, love, hugs, tears, etc in your post telling us of sara's hospitalization. i hope you know already though that they all of these things & more are coming from me to you across the miles. i wish so badly that i could be of more help in some way. as much as others are able to offer their support, thoughts, prayers, etc, very thankfully few if any of them have actually dealt with what sara & you (& the rest of your family) are dealing with on a minute by minute basis right now & in recent months. i am not saying that to at all diminish anyone else's sentiments, but i've been there - as has my family - and i feel so deeply all that you & sara are dealing with to the point that it literally hurts. i know the intensity of how difficult & scary it truly is & wish that i could some how bottle up the calmer months that i have somehow reached & send them your way. i will of course continue to keep you in my thoughts & prayers....for physical as well as emotional strength & sustenance now & moving forward, and for the current antibiotic regimen & line removal/ replacement to truly bring to a close the months of unrelenting fevers. it may seem like a distant hope but it IS possible. i can't recall how detailed or blunt i've been with you in regard to how dire all of my physicians thought things were for me in the midst of my year of seemingly unending infections, but largely they saw no reason for the repeat assaults to come to an end and as the severity of the complications & multiplicity of body system involvement seemed to be escalating they felt it was a matter of when, not if, a bout of sepsis would kill me. i was offered hospice, & just a few weeks ago one of my doctors looked at me with a bit of amazement in her eyes while she said that she never would have thought i would still be here. but while i still have a prognosis that would be considered poor by just about any "normal" estimation, compared to where i was a year and a half ago or so it's incredible. while none of us know for sure our hour or day, i no longer feel like everyone is waiting for me to die. while the possibility of sepsis rearing its ugly head is always a reality for me it's no longer the first thing i think of when considering what i might be doing in a month, or two, or even six. while my underlying health situation is still degenerative, based on how i've been doing over the past year it seems realistic to think i may have years left rather than only months or weeks. you get the point. what i'm getting at is that there is ALWAYS hope. despite how you can't feel anything but that you're drowning in the world of fevers & infection & whatnot at the moment it may not always have to be that way. my situation was considered about as bad as it could get & i had multiple episodes of septic shock wherein several of my body systems shut down entirely, so if i was able to be stubborn enough to reach the other side then sara can be too (as can you.) well....i'm feeling like my words aren't of much help & only hope that they aren't hurting. the last thing i want to do is introduce new fears & concerns so hope that i haven't done that. if i have i am so very sorry & will hope & pray that you can press delete on anything negative my ramblings have put in your mind. i guess i'm just writing b/c i want to be doing something & don't know what to do. i would be more than happy to talk to you &/or sara at any time if that might ever be helpful....not that i would have anything particularly helpful to say but i know that i would have paid a million dollars to connect with someone who had "been there, done that" when i was in the land of fevers for so many months. i'm sure that my mom would be happy to talk with you as well if you'd like to connect with another mother dealing with the situation from that perspective. i must applaud you though for how much you've been at the hospital. my parents & especially mom were/ are always there as much as they can be but they have their limits which come long before the need to change or shower while there. i have to admit that i'm a bit jealous of your constant watch; i'm very independent by nature but when i'm that sick that goes down the drain real quick & i've spent more than a few nights in the hospital after everyone had gone home & i really felt like i still needed someone by my side. when i feel even a tad bit better i'm ready for privacy & kicking the parents out but ah well.... i am now totally digressing. bottom line is - whether she tells you directly or not - it means the world to sara that you are there as much as you are. i mean it when i say that you are welcome to call me (or of course write) any time. hang in there the best you can. i KNOW it's easier said than done at times, but you CAN do it, as can sara. please send her my love & prayers & strength & sunshine & so much more. thinking of you both around the clock.... melissa p.s. so glad to hear that, in the midst of a horrible situation, that the nurses & staff are treating you well....it can't fix things but really makes such a difference, as you well know. do you feel good about the team of doctors on board as well? not so much in re: to being "nice" per se but in regard to their being on top of what's going on with sara, treatment, etc?
  24. sorry to hear about your appointment. i'm sure it was frustrating & disappointing after having your hopes up. re: vanderbilt, firewatcher's info may be correct for outpatient appointments at vandy but another option is to go there as a research patient. depending on several different factors, including a=of course whether or not you are in fact accepted into one of their research studies, this may be a way to get in to see them sooner. it's a bigger time commitment but here's the link with additional information, including the application & accompanying instructions:http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4779 if you do a search on vanderbilt & research or anything else of the sort you are certain to find a plethera of discussions about vanderbilt including those who have been there as outpatients or as research patients, which is generally inpatient, at least initially. hope this helps, melissa
  25. hi darlene - am i right in picking up that you're in ohio? are you looking for a PCP to coordinate/ take charge or a specialist? (or whichever works?) over the years i've seen a plethera of docs in northern ohio, both east (cleveland area) & west (toledo area, where i live now) & while i would certainly not recommend all of them i have a number that i've had good experiences with & would feel confident recommending depending on the need. if you are in ohio, particularly NW or NE, send me a PM or email & i'll try to help out in any way that i can. i will be straight with you though that some of my best docs won't go on an endless search for answers if they feel there's nothing to be found. i don't know enough about your specific situation to know how much digging has been done but there's a point wherein accepting reality & managing the symptoms is the best case scenario and, at least in my opinion, having a doctor willing to walk through this scenario is just as valuable (if not more so) than one who is willing/ able to run tests until the cows come home. this may or may not be where you are but i just wouldn't want to recommend docs to you with the impression that they will necessarily run endless tests if they feel there is no reason to do so. hang in there, melissa
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