Sunfish

increased gastric capacity = stomach able to handle being more full (aka can fit more food/ fluid in stomach at one time) hope this helps, melissa

re: your question about ritalin, i haven't used ritalin specifically but have taken several meds in the same family & have in fact had a decent amount of success. since i know you're a science person you may be intrigued to know that midodrine/ proamatine was actually developed as a result of the success seen with the use of ritalin in studies of those with orthostatic hypotension. i'm a bit foggy/ crashed at the moment so my explanation is likely to be lacking but i'll try for a short version at least. as you likely know ritalin & its family of drugs cross the blood brain barrier & thus have more of an effect - intended &/or unintended - on the central nervous system. a common side effect however is vasoconstriction - causing unwanted high BP for some taking it for ADD/ ADHD - &, as such, there have been research studies (quite some time ago) indicating some effectiveness with the use of ritalin in those with orthostatic hypotension. due to CNS effects that were a bother to some &/or to the regulatory issues, i.e. the fact that ritalin et al are more regulated due to the class of drugs they fall in, someone decided to try for a med that had the vasoconstrictive benefits without the CNS effects. and then there was midodrine. bear with my poor explanation but essentially the ritalin family of meds all have an alpha & a beta component to their make up. i'm not sure if it matters which is which for the scientific merit, but for the sake of conversation let's say that the alpha component is the part that causes the CNS issues & the beta is related to the vasoconstriction. i'm sure you get where i'm going. they were able to isolate the beta component so that the advantanges of the vasoconstriction could be had without the effects & the regulatory issues of the alpha component. hopefully you get the idea . that said, some individuals needing the vasoconstrictive component also end up benefiting from the CNS component....not generally in the way that one with ADD/ ADHD might but rather in the other direction. rather than the paradoxical effect of the stimulant seen in those with ADD/ ADHD some with orthostatic issues/ dysautonomia have cognitive &/or fatigue issues such that they benefit from the CNS effects of a stimulant. thus they do better on something in the ritalin family than on "just" midodrine. though of course, as is the case with just about everything, this is definitely not the case for everyone. and it's definitely true that some people with more "hyper" type issues to their dysautonomia have more trouble than benefit from taking a stimulant. for some a high heart rate is still helped b/c the vasoconstriction helps to raise BP which in turn reduces the need for compensatory tachycardia, but of course nothing works for every individual situation. and i know that you're someone who deals with particularly high heart rates. i know for some they also cause problems with anxiety issues, physically &/or mentally, though i would guess this is more likely in those who are predisposed to such issues, something i'm thankful to never have dealt with as part of my health mix. as for my personal experience, concerta was a key part of my regimen at one point several years back, as is daytrana now. though in all honestly the daytrana (a patch) seems to have more of an effect on my cognitive abilities than on my BP. the concerta definitely helped keep my BP up. i also tried adderall at one point but had side effects that were a deal breaker such that i can't say whether or not there was a benefit otherwise. in various combinations i have also taken midodrine at the same time as these meds as well. and for what it's worth i've never had an issue with a prevalence of hyper-type symptoms, for lack of a better way to describe it. while i did have the POTS diagnosis at one point with heart rates that went into the low/ mid 200s orthostatically, they were always very clearly compensatory for me & i've never dealt with any other part of my body being in overdrive in any way but rather the exact opposite. other that the fact that i talk fast the rest of me needs speeding up & has for years, which may very well correspond with the fact i've done fairly well with the stimulant meds. re: some of the things others have mentioned, just an fyi that some folks with nausea/ dysmotility issues actually find some relief from SSRIs, i'm not one of them but just thought i'd mention that they're not always a bad mix with GI issues. i think nina may be one whose GI issues benefit from a small dose of SSRI. i'm also a big fan of compression hose but be aware that you might not be able to tolerate waist-high hose due to GI issues, pacer placement, etc. i don't have a pacer but b/c of my J tube can't wear waist high hose any more. even though they are the ideal style for orthostatic support thigh highs are better than nothing & of course don't interfere with anything GI wise. b/c actually even without my G/ J tubes the waist high hose often aggravated my GI issues pretty significantly. hope this helps, melissa

how about ultram? it's never been a useful part of my arsenol but i know it's very useful for some. it's not considered a narcotic but it's got a lot more "oomph" than tylenol or motrin. along those lines another option might be toradol? i'm not sure about its use in post-op pain but i know it does wonders for any type of inflammatory pain....sort of like motrin times 10. it's done wonders for me for inflammatory issues; for specific types of pain it actually works better for me than theoretically stronger opiate meds. it's generally considered quite safe in limited doses but has very stringent guidelines re: how many doses/ days it can be used for. hope this helps. i'm definitely keeping you in my thoughts & prayers as you hang in there through the next - hopefully last! - surgery. melissa

whether or not a band-type device is likely to help is generally related, at least in part, to the etiology of one's nausea. if the nausea is more of a motion-sickness type thing it's very likely to help. if the nausea seems to be connected with POTS/ orthostatic symptoms in general or otherwise a more systemic it also may be worth a shot. this could include pregnancy-related nausea i suppose. if, however, you have a GI tract that's not emptying such that your food is stuck in your stomach and, as such, is thus causing the nausea, no type of band is likely to help. that said a band is a pretty benign thing to try so aside from the cost there's really no down side to trying it. re: other medication options, there are most certainly choices that are considered safe when taken long-term. no medication is without the possibility of side-effects or risk but, on the balance, some of the GI meds are considered fairly benign i comparison with many other classifications of medications. at the risk of being rude it actually really bothers me that a doctor (the other melissa's) would make such a blanket statement implying that all anti-nausea meds cause permanent organ damage b/c that's simply not true. not even close. any med of any type can cause permanent organ damage if/ when used improperly, and of course some are riskier than others, but meds exist for a reason & i don't like the sound of any doctor making that type of incorrect statement. (melissa is this a gi doc or your primary doc? iif nausea is really an ongoing issue for you i'd encourage you to either talk further with this doc or a different one, i.e. a GI specialist if this is your PCP. there's no reason for you to be suffering unnecessarily). one med that many people do have trouble with is reglan. it can cause pretty serious side-effects & they can be permanent, though that is definitely not the norm. you didn't specifically ask about that so i'll leave the details aside but all in all it's the med that is the worst idea for long-term use, and many can't tolerate it at all). my understanding is that that zofran is quite safe as well, though i've never looked into taking it around the clock on a continual basis. i've taken it intermittently for years & have never had any problems with it & my doctors have no concerns about my taking it. i've not been given any restraints on how often i take it either (more so than the prescription recommendation that is) but unfortunately it does nothing for my underlying nausea. it only seems to help me a bit when my nausea/ vomiting flair up particularly badly which means i usually take it between 3 & 6 times a week, give or take. i've been offered (& tried) taking it more to see if it helps though by more then one of my doctors over the years; it just doesn't provide me with any additional benefit when i take it more frequently. re: domperidone, someone else asked about it just a few days ago. the link to that post is http://dinet.ipbhost.com/index.php?showtopic=11052 and you should be able to read my ramblings about it there. for me it hasn't changed my life but i am better off with it than without. and i've heard many stories of pretty dramatic success, though also a good number wherein it hasn't helped much at all. i've heard VERY few instances of anyone having to stop it due to unwanted side-effects. and yep, it's generally considered relatively safe for long-term use. but go ahead & read what i wrote in the other post & then let me know if you have any other questions. there are a few other meds that can help with nausea as well but before i ramble on & on have you tried anything else with or without success? do you know the etiology of your nausea, i.e. is it "just" systemic quesiness or is there a more specific GI origin that you're aware of, i.e. gastroparesis. certain meds tend to help more (or less) depending on the "why" behind the nausea so, up to a point, it can efficacious to delve into what's making you nauseous in the first place. knowing the "why" can also help pin-point which, if any, dietary changes might be helpful as well. hope this helps, melissa

hi angela - sorry that the scan didn't give you (& your doc) much in the way of helpful info. bummer. and yep, by "lap" it's quite likely that he was referring to exploratory laparoscopic surgery, which is of course surgery & by no means anything to be taken lightly but also on the lower/ less-severe end of the specturm as far as surgeries are concerned. and if it's the only way to figure out what's going on & to start you on the road to some relief then it sounds like a very reasonable thing to consider. but moving on to the pain med issue. i would NEVER say that you sound stupid. you don't. on the balance i find it much wiser & more respectable to be cautious & a bit hesitant to start popping pills than to be overly excited for them. but that said, without wanting to sound melodramatic, you have a somewhat significant acute issue going on that is pointing your doctor toward surgery. if any time is an appropriate time for the reasonable use of pain meds your situation definitely qualifies. i can relate a bit to what you're dealing with. i had some really rotten experiences with pain meds myself over the years during hospitalizations &/or just after surgical procedures. so much so that, in combination with my pride & determination to "tough it out" no matter what, i was sort of scared of taking them. i had a history of them making my nausea skyrocket, my BP drop to the point of my dizziness & syncope going through the roof, etc. essentially side effects that were just as bad or worse than the pain i was supposed to be taking the pain meds (narcotics) for in the first place. but - that said - they have there appropriate time & place and when used appropriately should be able to bring some degree of relief with little or no unmanageable side effects. all in all what i'm getting at is that not taking/ using pain meds appropriately can be just as bad as using them inappropriately. being in such severe pain is a huge stressor on your body & can itself cause additional problems. it literally took several years for my PCP to convince me that it was okay for me to take the pain meds that were appropriate to my situation & i still have a tough time doing so at times but, on the balance, my quality of life & functioning is better for it. and you're not having to make a permanant decision at all....only one that's temporary until you figure out what's going on & are able to resolve the underlying issue. so....obviously it's your decision but i would encourage you to at least try at least a small dose of the meds your doc prescribed. it's totally reasonable to start small, as long as you make sure that the pills you have can be split. do make sure that you don't have an extended release formulation b/c, if you do, splitting them will actually give you a larger dose at once than taking the whole pill, which is obviously NOT what you want to do (& can be very dangerous). it's likely that you were given a higher dose of whatever you were given in the hospital & you had a lot of other issues going on at the time so i would hate for that bad experience to be the reason you're suffering so much now, ya know? as my doctor likes to tell me, "are you trying to be a martyr?" and just as a point of clarification, your prescription is not for 750mg of vicodin but rather most likely for 750mg of acetominophen (aka tylenol) combined with either 5 or 7.5mg of hydrocodone. vicodin is a combination of hydrocodone (an opiate/ narcotic) & what we're all used to calling tylenol. the combo is not anything to be taken lightly but is a very reasonable dose, either in full or in half, to be taking for an acute surgical issue. as long as you don't take it more often or in a higher dose than your prescribed you'll be able to stop taking it when the underlying causation of the pain is resolved. i by no means want to sound like i'm pushing drugs but as someone who was extremely hesitant to accept them myself i know what it's like to be unreasonably opposed to them as well. hope this helps, melissa p.s. i just realized that you said you already took half a pill. hopefully it brought you some relief but if not don't hesitate to try a full one - assuming that's what you prescribed of course - when you're due/ able to take your next dose, especially if you didn't have any adverse effects from the half dose. something else that is helpful for some is to take it with a bit of something in your stomach, i.e. some crackers, a banana,etc. let us know how you're doing!

just another thought, though it may or not make sense to you since it sounds like your patches are different than mine as mine have a bit of a resevoir. if i were going to remove my patch & reapply it daily i would think the best method of preservation/ storage might be to do my best to reapply the original back onto the patch & then put it back into the original envelope packaging, which in the case of mine is a sort of foil. after that i would then put it in an air-tight container. good luck! melissa

hi angela - i'm so sorry to hear that you're hurting so much. i've had (& still have periodically) times of bad abdominal pain & it's truly horrible. there's no way to ignore it, work through it, or anything else for that matter. but i'm telling you something you already know. and while i know that it's not the underlying issue, i'm confused though re: why you can't take the vicodin if your doctor told you to do so? sophia's post references your not being able to take it..... i of course hope & pray that your testing today will result in some answers asap as well as a ready solution & pain relief. there's no reason that you shouldn't have your pain at least semi-controlled in the meantime though so if the meds you have don't even touch the pain &/or if there's a reason you can't take them you need to let your doctor know that via a call to his/her office asap. i definitely know how it feels to only want relief regardless of the answer & without any consideration of any "bad news" or whatnot that comes along with it. when you're hurting that much it's next to impossible to even consider anything other than wanting & needing the pain to decrease at least even a little bit. i've had times wherein, if someone had convinced me that cutting off both my arms & legs would decrease my pain i would have signed on the dotted line in a heartbeat! oh, & regarding "segs"....segs on blood work is short for "segmental neutrophils" which is one of the types of cells used to fight infection. depending on how elevated your number is/ was it may or may not mean anything. if it's just a bit elevated it probably doesn't mean anything. a significant elevation indicates infection though doesn't indicate the type, location, etc. i'm not sure whether an elevation can correlate with inflammation rather than infection. some infection-markers in bloodwork have some overlap with indications of inflammation but i'm not sure if that's the case with segs. if your PCP saw your seg values though & wasn't concerned i'm guessing they weren't too high and, as such, probably aren't related to anything else that's going on at the moment. hang in there the best you can. i know it's easier said than done. and do keep us in the loop the best that you're able.... melissa

sorry to hear your experience was so painful. i never realized how lucky i was to have an easy experience with the procedure, which was likely due to the fact that i have such extensive nerve damage in my bladder (requiring me to self-cath since it can't empty on its own). hope you feel better after some rest & that you never have to have a cysto again! melissa (the other one)

while obviously all medications are medications & should be treated accordingly, domperidone is, relatively speaking, much safer than many other prescription meds. and while of course over-the-counter medications are still drugs that should be handled with due respect for their potency, the fact that domperidone is in fact over-the-counter in many other countries says something for its safety profile, as does its use throughout the world in children. the reason that it is not fda approved in the u.s. is largely political & has little if anything to do with scientific/ medical merit. but with all that said, of course it is still a medication & you are wise to be fully informed before jumping in (as is anyone before taking anything for that matter!) as julie/ mack's mom mentioned, if you'd like a lot more input the yahoo gastroparesis group will provide you with more than you could ever want:-). even if you don't post your question there you could join in order to search/ read through the archives which would be quite informative in & of itself. but i'll try to answer your specific questions to the best of my ability given my own situation/ experience: 1) Does it help with your nausea? yes. definitely doesn't eliminate it but all in all my nausea is notably worse without the domperidone than with it. i've tried to stop it several times & on each instance have restarted it for largely this reason 2) Does it help with constipation? not particularly. quite honestly i can't say that it has or hasn't. at times i struggle more with constipation than at others but it's nothing that's seemed to correlate in any way with domperidone 3) Have you had any side effects? at one point i think i MAY have had a dull headache for a few days after a dose increase, though it was nothing more than an annoyance & nothing that kept me from doing anything. it subsided & very well may have had nothing to do with the domperidone in the first place. even if i had that headache 24/7 though i would choose it - as it was fairly mild - over the nausea that the domperidone definitely helps with. other than that i have only had a bit of lactation, though it has been very minimal. i don't "leak" or anything but if i push/ press on my breasts, i.e. during a self-exam, a few drops of liquid might come out. it's a bit odd but nothing more. none of my docs feel that it's anything we need to be concerned about. 4) What is your dose and what times of day do you take it? currently i take 30mg 4 times a day, the first whenever i first wake up & then approx. every 4 hours afterward along with my midodrine doses with the last dose falling right before i go to sleep for the night. my dose is a bit higher than the standard recommend dose though is one used fairly often by some of the motility specialists for mroe severe cases. i've actually tried up to 40mg 4 times a day but didn't get any additional benefit from that increased dose. i do better on the 30mg dosing though than on 20mg 4 times a day (the official max dose). most people take 10-20mg either 3 or 4 times daily. 5) Did you have to build up on the dose gradually, or did you start on a full dose? domperidone isn't a med that necessitates working up to a dose for any innate reason, but that said it's logical to start with a smaller dose in an effort to find the smallest effective dose for the given individual. years ago i started on 10mg three times a day & worked up as needed. most people tend to start at 10mg 3-4 times a day; i have not heard of anyone starting lower than that. 6) How long before it kicks in? Do you know within a day or two that it's helping (or not) or do you have to stick with it for awhile? while some people claim that it works after only a few doses or days the typical & official wisdom dictates allowing more time before evaluating how well it is or isn't working. when i first started taking it i was told to give it 2 weeks though i have heard others say that it can take up to a month. when i have been off the med entirely it usually take a week or so for me to notice it's back on board; after dose increases i have generally been able to notice after a bit less time, say 2-3 days. hope this helps, melissa

me again:-) so sorry that things are still so rough. not really sure what words of wisdom to offer other than to keep on hanging in there the best you can, which i know is often easier said than done from any perspective (patient, mother, etc). not being able to draw blood out of a central line may or may not mean much of anything. most often it's just a positional glitch that resolves on it's own, though of course it can mean something more such as a blood clot. one thing that's ALWAYS true though is that if it's not wanting to flush &/or give blood for a draw that it should never be forced b/c regardless of the underlying issue - small or large - that can in & of itself cause significant problems. hopefully the nurse that was called in was truly proficient in working with lines b/c, quite honestly, no one else should be touching them if/ when they are acting up. though i know that in the midst of an acute crisis, however large or small, you're largely at the mercy of whoever is around & are thus in a bit of a pickle. and as much as i'd like to reassure you that they're catching all there is to catch, if i'm honest i'm right with you in wondering if there's still something hiding out somewhere that as of yet has escaped detection. i will definitely continue to hope & pray though that the cipro works wonders &/or that, if it doesn't, that the core issue is identified asap so that it can be dealt with. regarding home health care, for the most part i have had largely good experiences with the nurses i've had over the past few years, though there were a few exceptions along the way . largely i've had a primary home health nurse each of the 2 places i've lived since first starting with home health care & both have been truly wonderful. over the years i've had home nursing visits ranging from two times a day to intermittently as needed, though if they're less than once a month generally one will be discharged from the service & readmitted when needed. i also have nursing students that i've hired myself to help with some things that i either can't do myself or else that, by not doing them, i'm able to use my limited time/ energies on other things. they have also been great. do you have specific questions? most importantly i would just encourage you to NOT accept anyone that you & sara are not truly comfortable with, both clinically & personality-wise. when i had to move home the first nurse that we tried was absolutely horrible. i was hesitant to complain but am SO glad i did, eventually causing us to not only end up with a new nurse but a new agency all together. in terms of what choices you will have it's going to be dictated largely by sara's insurance...i can't recall at the moment if she has medicare/ medicaid? if that's the case the guidelines are MUCH more stringent such that qualifying for home care is a bit tougher, especially on an ongoing basis. qualifying after a hospital admission, related to an acute illness, etc is quite doable but having a nurse assigned to you on a "permanent" basis is less realistic without very particular circumstances. that said there are other options as well, such as having other home health professionals be a part of the home care team, i.e. phlebotomists (sp!) for blood draws. the fact that sara has a central line, however, bodes well for qualifying for actual nursing visits though since others are not certified for central line blood draws. not once did i have trouble with qualifying for my home nursing over the past several years until my infectious disease docs put the ax on our drawing blood from my central line/ port (due to the increased risk of infection). as such, i dont need a nurse to do a regular blood draw & since i'm an old hat at all my other stuff (tubes, accessing my port, wound care, dressing changes, TPN set-up,etc) i no longer qualify for any "teaching needs" that would allow regular nursing visits. any time there's something acute i still qualify with no problem, which - since i almost always have somethign acute going on - means i almost always qualify, but for regularly scheduled blood draws i qualify for a home visit from a phlebotomist now rather than an RN. confused yet? most of my ramblings probably aren't important but let me know any questions you do have re: home nursing (or other home health care) & i'll try to help out in any way that i can. melissa

flop, endure et al - just as an fyi, i'm 99.9% sure that all varieties of fentanyl patches are the resevoir type and, as such, can NOT be cut. unless they are much different over on your side of the pond . here in the us of a though i've used the patches from several different manufacturers & based on conversations with my doc & pharmacist as well as reading i've done i'm quite certain that none of the available patches can be safely cut....obviously can't hurt to double check just in case the manufacturing/ design of your patches differs significantly. melissa

sara's idea is actually a very good one. my pharmacist emphasized to me that should my patch ever start to come off, fall off, etc that there's still plenty of the drug inside & that, as such, i should just tape it on myself. in other words the adhesive itself has little to do with the drug inside, other than the fact that you would want to keep the adhesive area unobstructed so that absorption could still take place. i wouldn't mess with any type of refrigeration or anything of the sort but since removing the patch seems non-negotiable, removing & reapplying the same patch could work out. you might have to play around to find the best type of tape to reapply it with, i.e. one that works without bothering your skin too much, but there are LOADS of options so plenty to try even if you have very sensitive skin. additionally you might be able to pursue getting a patch for every 2 days rather than every 3. still not ideal but better than nothing. i mention this only b/c my doc asked me if my patches lasted me for the 3 days as she has some patients who need to change them every 2. she explained to me that there's a certain population that metabolizes them a bit differently such that they don't last for a full three days; this is something that has been researched with results published in medical journals & she has no trouble getting the every 2 day doses covered by whatever insurance coverage they have, government or private. hope this helps, melissa

how high does your body temperature actually get? prescription inserts have to lean on the side of extreme caution. i've spoken with several of my doctors & my pharmacist about how the fentanyl patches react to body temperature fevers & have learned that problems don't tend to occur unless someone has a REALLY high fever, i.e.106-107 or unless something such as an electric heating pad on high is held directly over the patch. upon reading the insert i was concerned myself due to my history of chronic fevers but all of the physicians & pharmacists i spoke with, all of whom i know well & trust immensely, felt that there was nothing for me to be concerned about. if the med were to be released a tiny bit more while you were sleeping the worst that might happen is that you might get a bit drowsy; since you're supposed to be sleeping that would hardly be considered a problem. i'm not trying to minimize your concerns; having read the same insert myself it's obvious that you're only trying to be responsible & cautious, particularly in light of the fact that fentanyl is far from a benign drug. i'm also not one to generally defend anyone trying to deny someone a much-needed medicine. it may very well be however, in this case, that the cost of being overly cautious in this case isn't really warranted. additionally, while i know it's with the blessing of your doctor(s), the fact that you're removing the patches nightly is not the best way to keep an even dose of the med in your system. quite honestly, if i were the person reviewing your situation & the determination of whether or not a patch daily was warranted (rather than every 3 days), i wouldn't be convinced. unless you have actually had the "overdose" reaction due to body heat OR unless your body temperatures reach 105 or higher for long periods of time, i.e. several hours, it's probably just not necessary. i hope this helps... melissa

hiya melissa - my heart goes out to you. without knowing you & the intimate details of your situation, all you've already done both school-wise & health-wise to try to make things work over the years, etc. i'm not sure whether to go nuts with brainstorming & encouraging you along the lines of keeping on with school or whether you've truly done all there is to do & are instead at the point where, as can happen, the limitations of your health/ body are such that no amount of brainstorming or determination can or will make any difference. it's a fine line to walk (between the two) and one i know all too well. most people tend to fall on one side or the other, either pushing beyond when/ where they should be pushing or else calling it a day way too soon. knowing how frustrating it can be (however well-intended) to have people chime in with oodles of suggestions of things you've already tried but also being the last one who would ever want anyone to jump ship earlier than needed i'm going to hold off on either for now. first & foremost my heart goes out to you, regardless of where you are in terms of working with the disability office, requesting assistance/ accomadations, etc. b/c no matter what you have or haven't done up until now it's a cruddy place to be. trying to figure out what's best for your health, finances, life, etc in the midst of feeling cruddy, making decisions based on factors that you can't fully know, i.e. what lies ahead for you health-wise, etc. there's no way around the fact that it's tough. really really tough. i've been there, as have many others on the forum in various ways at different points in time. for some people the right answer has been to keep plugging along and yet, despite the encouragement that folks will throw in, there is a time & place to realize that determination can only take one so far. i don't know what your situation is b/c i don't know you well enough yet, but none of them are easy or fun, which i'm sure you don't need me to tell you. i feel like i'm rambling & not being helpful in any way at all & for that i apologize, but i also know that there are times when just feeling/ knowing that people are listening & supporting you means a lot so i hope that i can at least be worth a bit in that way. since you asked for others' stories specifically i did a quick search for some of my heartfelt ramblings during my semester & a half of grad school. for me it was something i tried long past the time when my body was really too ill to be doing school of any sort but i was stubborn & despite what my doctors, family, & body was telling me i had to push ALL the way. i am NOT posting my ramblings b/c that's the point you're at but only to show you that the struggle is definitely not something that no one else has dealt with. so don't take any of my details for any type of guideline/ instruction by any means. i'm not telling you that your situation is what mine was in that you're at the point of having to accept that school isn't an option. i am NOT saying that at all. every situation is individual and if you are looking for more "counsel" per se i'm one that won't give it without hearing a lot more about what all you've tried to make school work, your day to day health reality, etc. i know you definitely have been struggling health wise but don't feel that i know enough about how you've tried to be creative to make school work to comment in detail. that doesn't mean that i don't think you've done so, only that i don't know enough one way or the other to comment. pretty much i'm not wanting to encourage nor discourage out of turn, as both can be a royal pain. so with that said, here are a few of my posts from a few years back: http://dinet.ipbhost.com/index.php?showtopic=3417&st=0 http://dinet.ipbhost.com/index.php?showtop...amp;#entry41026 http://dinet.ipbhost.com/index.php?showtopic=6123&hl= looking back i can easily still bring up the difficulty of the decisions that weren't really decisions, the grieving, etc. not easy any way you cut it. i'm to tired at the moment to say anything else with even the slightest bit of intelligence. if nothing else though my ramblings should help you to realize that others, including me, have been there. hang in there the best you can...i know it's not easy. melissa (the other one)

lol meg....great minds think alike. we both seem to have posted our florinef question at the same time .

there are probably more people on the forum who deal with (or have dealt with) high BP in some way than you might think. despite what many think, dysautonomia can include a wide variety of BP &/or HR issues (among other things), which most certainly can include periods of high BP. as you mentioned yourself those with hyperadrenergic POTS will often have periods of high BP but it's by no means limited to that dysautonomia diagnosis. since dysautonomia by definition is a dysregulation of the autonomic nervous system it only stands to reason that this will include not only low but also high BP within its day to day scenarios. i'm not sure if this is in any way relevant to what you're asking about and/or dealing with, but i've dealt with both of the things you're mentioning individually, though not necessarily in any way that they seem to correlate with one another in any way. for what it's worth, low potassium is something that's come up for discussion on the forum quite a number of times over the years. while in recent years the low potassium has generally been related to issues of nutrition (or lack there of) due to my severe GI/ motility issues, it's something i seemed to have an issue with long before my GI issues were a serious issue. back to the high BP, i had an unusual period this past year of several months wherein my BP tended to be on the higher side rather than my more "typical" low BPs that i've had for years on end. i still had issues with OH during that time (BP dropping when upright), but my baseline was, at times, ridiculously high. for years, however, it's not been unusual for my BP to spike high for short periods of time, and none of my autonomic docs have ever seemed to think it strange. for what it's worth my diagnosis is autonomic failure (aka progressive autonomic neuropathy). i don't doubt that for some there may be a relationship between BP & electrolytes though, for me, there's never been any sort of notable connection. i guess i'm just chiming in to say that, at least on their own, neither of the things you're dealing with are particularly unique to a good number of people on the forum. both come up in a variety of ways on a pretty regular basis. without additional information i have a hard time understanding why your doctor would think that either &/or both of these things would be a reason to think you have cushings &/or another type of adrenal problem? just my two cents, melissa p.s. you're not on florinef are you? that's a HUGE factor for low potassium for many, and could also contribute to high BP...

hello my fellow namesake - i don't have time for one of my more typical lengthy posts at the moment, but i have had a "bladder endoscopy", though not for the same reasons. i think i've posted about it several times, as have some others, though you'll likely have better luck if you search for "cystoscopy" as that's the actual term. just quickly, though, i would guess that the doc wants to do the test more b/c of your frequent urination (in small amounts) rather than b/c of your urine being "too dilute". otherwise it honestly doesn't make a bit of sense. and no, there's no systemic anesthesia usually used so no worries there. i'll try to get back on later this evening/ night to write more but if you look up "cystoscopy" under old posts of mine you should be able to find a least a handful of ramblings - including info on having the test done - in the meantime. be back later! melissa (the other one)

hi susan (& sara) - me again:-) and yep, for better or for worse, i'm probably the closest thing to an expert that you're going to find on here when it comes to mysterious fevers and/or sepsis. not a title i'm particularly glad to own but one i've certainly earned (though i'd rather have not!) as such, i don't by any means intend to be overly picky with my questions, but i suppose in actuality i DO mean to be picky b/c the details i'm asking about DO matter. so...in regard to the blood work she had done during the fever this past time, did they do blood CULTURES or "just" white cell counts, CBC, etc. bottom line being did they run ACTUAL BLOOD CULTURES? i don't care they people say that that's a secondary test to white cell counts, that without any inflammation around a line site & with a normal white cell count there's no reason for cultures, etc. b/c as you and most others here know, things don't always go according to how they're "supposed to". i'll share just a bit of a history for you re: my own experience with unexplained fevers, in case you missed any part of it (i know you know at least portions of it as you tried to help me out on many occasions yourself based on sara's experiences). i may repeat some of what you already know but i figure it can't hurt to have it all here in one place so bear with me. as any/all who have been around on here for awhile know, i've had multiple bouts of truly horrific sepsis, septic shock resulting in multi-system organ failure, etc. not thought to be caused BY my central lines but rather by an intestinal source but, in the end, still always settling in whatever central line i had at that time. my standard pattern was that i would start with chills, spike a fever, & essentially be in a life-threatening situation where i would require ICU-level care within hours. obviously that's not what's happening with sara. and thank God for that. it's something i wouldn't wish on my worst enemy. but i digress. moving on, for a reason that no one short of God has a reason for, the last time i had sepsis i did NOT have that presentation. it was during that time period - one that lasted from september of last year until january - that my chills & fevers, however horrible in the moment they were occurring, never elevated to the same level as my previous episodes. relatively speaking, particularly compared to anything i'd experienced previously. as such, no one - medical folk or otherwise - could imagine that something similar was still going on. we did blood repeatedly, scanned me up & down & inside out (including a PET scan, approved due to the fact that i had spots on my lungs, something we now know were related to infection), etc. my white cell count was never more than a smidgen above normal, such that it was considered inconsequential, and b/c i was so "well" - for me, in comparison to much of the past year of my life - it was near impossible for anyone (including me) to believe that i could have any type of systemic infection going on. this went on for MONTHS. without giving you the blow by blow ins & outs of when the fevers happened, initially there was no pattern to them at all, and there still isn't in hindsight. later on there was a pattern, at least at times, that corresponded to the use of my port. i had low grade fevers almost daily, something that was easier to pin on the overall dysautonomic mess otherwise known as me, but as much as it was hard to imagine that i could be living so "well" with an infection, it was equally difficult (if not more so) for me to buy that the spikes were "just" dysautonomia. but i had loads of blood work done, including blood cultures, and nothing showed a thing that even slightly pointed to anything infectious. other than some abnormalities on my lung scans that were, at the time, easily explained as scarring from major lung trauma i'd had during a previous ICU stay, nothing even slightly resembled anything related to infection. except of course the fevers that kept coming. and while the low grade stuff was something i felt i could manage the high spikes & the accompanying chills, as you & sara know too well, are scary on a different level. and the fact that i had such a history of the exact same symptoms spiraling so quickly into something life threatening added another layer of discomfort to their companionship (to put it mildly.) but again moving on... "everyone", despite feeling a bit at odd with things, decided that the fevers were "just" my autonomic craziness & that i'd just have to live with them. this included my PCP, dr. grubb, my infectious disease doc, pulmonary docs & GI. no one liked it but there wasn't much left to do. we'd run CBCs & cultures galore, including CBCs during fever spikes (including white cells) & cultures every which way, including from my port itself, and nothing was showing up. BUT WE HADN'T ACTUALLY RUN BLOOD CULTURES DURING ONE OF THE HIGHER FEVER SPIKES. thankfully the timing fell once so that i spiked a fever while i was at an appointment with dr.grubb. since it was at his hospital clinic he decided that we should run stat blood work "just to make sure". we did just that & as such got some of the results while still there, namely the CBC portion (including white cell count), and yet again it came back as normal. so we left with him, as well as us (my mom & i) feeling like it really was "just" the autonomic. we didn't like it but what else could we do? at least it didn't include ICU stays & brushes with death. imagine our surprise, however, when the next day my PCP, who had just gotten off the phone with dr. g, stopped by our house with antibiotics. my cultures, despite a normal white cell count, were growing, and since i was stable dr. g & she were waiting to see the rest of the info for the cultures to decided whether or not to admit me or try to treat from home. the story actually continues, as that first postive set of cultures occurred mid-november & we managed to keep me home until mid january when i ultimately did end up in the hospital in order to get me clear of infection. the details of that time period aren't particularly relevant for you right now though, but what is relevant is that i/ we went for months with everything pointing to my fevers being autonomic rather than infectious. so at the risk of being a pain in the behind, i really have to insist that you make sure sara has had BLOOD CULTURES - not "just" blood work - drawn DURING - not "just" after - a high fever spike. if she hasn't, and if you need info/ suggestions on how to get the logistics of it set up (as i know it's not easy to get anything orchestrated in the midst of shakes & fevers), don't hesitate to let me know. but a normal white cell count during a fever (or any other bloodwork for that matter) nor clean blood cultures at any other time, while by standard protocol might be considered to rule out infection, DO NOT. i know i'm being persistent and probably a bit annoying, but i'm only doing so b/c despite never having met either you or sara i really do care. and, as much as i know how rotten it is to be dealing with the fevers, even more critically i know first-hand that they can turn in to so much more. and if there is something infectious going on i'll risk being a pain to potentially keep sara (and in turn you & the rest of the family) as far away from septic shock & ICU as possible. if there is an infectious cause her body has been fighting it off amazingly well on a cyclical basis. it might continue to do so indefinitely but at any point it could also be not quite able to in which case things could & would take a serious turn for the worst. i am NOT trying to scare you or be melodramatic...i just want to do anything & everything i can to help keep you away from some of what i've dealt with (as well as my family). okay....i suppose you get my point by now. all in all i'm really just trying to hammer home the question of whether or not blood CULTURES have been drawn & run DURING a high fever spike. that's the ultimate/ crucial test which, without, infection can't ultimately be ruled out. if you have any questions feel free to let me know. and yep, i definitely realize the WHY behind your trying to learn & be educated/ informed so that you can help communicate & advocate for sara when she is not able to. since it's something that you seem to be doing instinctually it might be hard for you to realize that not all parents do that though, regardless of need. sara's lucky to have a mom that's takes that initiative. while i'm more than thankful to be on top of things cognitively when i'm at my best, i have many hours & days (& have had weeks & months) when i'm not at all, and at those times a lot of my "communication" with doctors is left to pages of info that i have typed out that my parents then pass on; my parents are around & definitely care & help with certain things, but they just don't have it in them to be as educated & on top of things as you are. i'm not trying to whine but rather just trying to make the point that your level of involvement & advocacy isn't something that all parents jump into, regardless of the need existing. as such, whether she realizes it of not, sara's very lucky to have you. but anyway..... both you & sara continue to be in my thoughts & prayers. i'm not sure what it would be, but let me know if i can ever be of any help in any way. keep on hanging in there; i know it's often easier said than done... all my best, melissa p.s. none of my central lines have EVER looked even the slightest bit "off" when i've had a systemic infection, something that docs' have thought may correspond with the fact that my lines haven't been the initial site of the infection. the one time i had a localized line infection several years ago i had swelling near my site - actually due to infected blood clots - but that time the infection wasn't systemic. i know you realize that the site doesn't have to look problematic but just wanted to point out that with all the times i've been septic mine NEVER have been.

well, i definitely feel sara's (and in turn your) pain. i've been there. but before i go on & on with my comparable story, has sara had blood cultures taken DURING a fever? both peripherally AND from her central line? NOT "just" a white cell count and NOT soon after a fever but while it's actually happening? i'll chime in more with some thoughts after hearing your answer.... no matter what i definitely agree with the fact that sara's very lucky to have you. as someone who has parents who are great in many ways but who don't (and never have had the tendency to) pursue further information, answers, etc on their own about my health issues, i can attest to how much it must mean to sara to have you advocate for her to such a degree. i know it doesn't fix things, but it means a lot. i'll look for your reply re: the blood work & then follow up further, melissa

hi mary - i voted "other" as none of the other options really do justice to my GI situation. i have severe GI dysmotility from my stomach on down....essentially everything except my esophagus/ swallowing is affected. my stomach is completely paralyzed (aka severe gastroparesis) to the point that it's attached to a drainage tube (g tube) 24/7 to drain bile, saliva, etc b/c otherwise i throw it all up. (the drain also allows me to "eat" liquids but that's not why i have it.) i have GERD as well, largely as a result of the gastroparesis (though it was one of the first things that presented itself as far as symptoms are concerned, many years back now.) my small & large intestines are also seriously affected but not the degree that my stomach, though that's all relative. my intestines aren't able to process tube feeding but on most days at least, they are able to handle my medications, which i have to put in via my J tube. on bad days, however, or if it's too much volume (i.e. if i try to do tube feeding on a consistent basis), what i put in to my J tube, which is in my small intestines, actually backs up so that it comes out of my stomach. the dysmotility of my small intestines is technically diagnosed as intestinal pseudo-obstruction, meaning that they behave/ function similarly to if there was a physical obstruction blocking them even when there isn't. the pseudo-obstruction is very painful. as for my large intestines, they're far from normal as well, and there's been some discussion of my having them removed entirely, though it's nothing that's being actively pursued at the moment. i actually alternate between constipation & diarrhea, but not in an on again off again way. it happens in periods of many months, i.e. i'll have nothing but diarrhea for 8 months, then will switch to being constipated for another decently long period of time. this is with no changes to my "diet" b/c i can't eat anything i don't really understand it, but several of my doctors have explained to me that my diarrhea, when i'm having it, is actually a byproduct of the severity of the lack of motility in my colon rather than the more typical etiology of diarrhea, i.e. intestines moving too fast. i realize that may be far more than what you were looking for, but that's th scoop as far as my GI issues are concerned. all of it is believed to be a a direct result of my systemic autonomic neuropathy. while the severity of my issues may be a rarity, it is very common for all different varieties & severities of dyasautonomia to have some type of GI dysmotility as part of the picture; ISB is one of the diagnostic terms that may be given. as a it of an FYI, be aware that, while most all GI docs (& even many PCPs/ internists) can sufficiently treat garden variety IBS, as a general rule they are NOT equipped to handle more severe &/or complex motility disorders. so if anyone reading this is having trouble to the point of frequent vomiting, losing a lot of weight, etc. and/ or you simply don't feel that the severity of your GI issues is being treated appropriately, you many need to seek out a motility specialist. that's all folks... melissa

hi ken- it's very unlikely that anyone on the forum is going to be able to recommend a GI doctor for you in that specific area. do you have a primary doctor? or any other doctor you see for that matter that you feel decent about? if so, asking that person, or even just the office s/he works in, might be a good place to start. if you see any doctors that are affiliated with a particular hospital system that also might be a direction to take, as there are definitely advantages when you see multiple specialists to having them in the same system; it makes it easier for them to share records (blood work, testing, clinic notes, etc) and, as such, can facilitate the coordination of your care. it also makes it more likely that they might know each other, though obviously that's not a certainty. if you get a recommendation from someone for a doc in a different system i'm by no means telling you not to pursue that lead; rather i'm just trying to help you with some other routes to pursue while pointing out the advantage(s) each might have. hope this helps, melissa

there's definitely no direct relationship between costochondritis & POTS (or any dysautonomia for that matter). that said, i don't know enough about EDS, (which is generally understood to, in some cases, be related to POTS), to say whether it (EDS) may be a risk-factor for costochondritis. but seeing as you don't have EDS that doesn't really matter much, does it? so moving on... i've had costochondritis so know first-hand that it is NOT fun. mine was pretty distinctly the result of an injury from vomiting; considering how much of that i've done over the years (b/c of gastroparesis) my doc told me that she was amazed it was the first time i'd had a problem. so i guess i'm lucky?! initially my pain had a sharp component that reminded my of pain i've had with several bouts of pneumonia &/or pleural effusions; the difference was that there was also a soreness component externally, aka with palpation. the sharp part of the pain improved a bit before the soreness but would still come back with a deep breath. and it hurt pretty badly for sure. as an FYI, the fact that your pain hurts upon breathing doesn't particularly point to it being a lung/ respiratory problem. when i had the costo breathing was just as painful as many (though not all) of the times i've had pneumonia &/or pleural effusions. in addition to taking motrin/ ibuprofen alternating with tylenol, as well as increasing my regular pain meds (opiates) for a few days so that i could at least be comfortable enough to breath well enough to function/ sleep, my doc prescribed me a patch by the name of "Flector" (the name brand). it's fairly new to the market & not cheap, but it worked quite well. essentially it's an anti-inflammatory that works locally rather than systemically. you put the patch on over the area that hurts the most & after a bit of time (i can't remember how long....a couple of hours i think) the full effect kicks in. it didn't take care of the pain entirely but allowed me to take significantly less "oral" (for me via my J tube) meds & certainly made for a more pleasant few months. the patches are intended for a wide variety of inflammatory conditions and, by way of whether or not they help at all, are in a way diagnostic in terms of whether the pain one is having has an inflammatory component. each patch last 12 hours so the idea is to change them on a schedule to keep a steady dose of the med going such that you don't have the lag time of waiting for it to kick in. i don't know a lot about costochondritis but what i do know supports the idea that it usually goes away on its own within a few months or so. that said, if there's any way you might be doing something (i.e. vomiting) chronically to keep irritating/ injuring the area, i don't see why it couldn't be something chronic. as for diagnosis, i do know that xrays aren't worth a whole lot. they'll show if something (i.e. a rib) is broken, but won't show a thing as far as injury/ inflammation in the cartilage. when i was hurting my doc said we could do an xray if i really wanted but that it wouldn't change anything as, even if i'd had a break/ fracture, we'd still be treating me the same way; as such i didn't get one. i'm not sure if an MRI or CT scan would ever shed light on a long-standing problem such as what you're dealing with? though as a long shot i doubt either are a viable option with less than ideal health insurance. regardless, i'm sorry you're dealing with this. i don't envy you one bit. i live with pain all of the time (mostly related to intestinal pseudo-obstruction) but the costo pain was particularly tough as it was so interconnected with every part of me....any move i made regardless of position, breathing, etc so i certainly hope you find, if not an answer, a way to find a bit more relief. since you say that anti-inflammatories do seem to help you some perhaps trying the flector patches might be a viable option? as for the expense, one thing to keep in mind is that they're pretty large and, as such, you may be able to get 2 uses out of one patch; they are safe to cut in half. hope this helps, melissa

hi all - i started writing this as a "reply" in the recent post on sinus pressure but realized that it wasn't really a reply at all but rather a question of my own. that said, i've considered trying a neti pot myself for some time but, for no reason in particular, haven't made it priority to pursue. i don't have major trouble with sinus infections but do have chronic allergies/ rhinitis that i've just come to accept as a part of life & while it's by no means even close to the top of my list of health problems, i'm all for anything that might improve how i feel in any way & have wondered if a saline rinse &/or neti pot use might do just that. and heck, improving how i feel in even a small way certainly can't hurt the bigger stuff so why not? particularly since my current living situation doesn't allow me as much control over allergens in my environment. so....i have two questions for any of you that have used a neti pot or something similar: 1 - most importantly, are you able to manage using the neti pot (or similar such thing) from a seated position? i can stand over the sink for a minute or so but not much longer, and expect the rinsing process takes longer than a minute from start to finish. i manage to be pretty creative with lots of other things that most people do standing so don't see why i shouldn't be able to do so with a neti, probably along the lines of sitting & using a tub instead of a sink, or figuring out a way to sit on the counter over the sink or whatnot, but figured i'd ask just to make sure others haven't had a problem with standing/ positioning. 2 - are there any types of the neti pots (or similar such things) that you've NOT been happy with? i've looked a bit & have come across several varieties of "neti pots", i.e. long & slimmer (looks more like aladdin's lamp), rounder (looks more like a tea pot), etc. is there any reason to get one over another? any merit in going for the name brand or okay to go with whatever's the best deal? none are cost prohibitive but figured i'd ask those who might have tried. i'm not too worried about finding the "absolute best" bust just want to make sure there aren't any that folks have found to be a complete waste/ hassle. i fully expect any of them to be a bit weird & messy to use initially but rather just want to make sure in the long run that i'm deciding on the right thing. thanks bunches!!! melissa

like the other melissa, i've had similar "reactions" when my BP is too low &/or when i'm ridiculously fatigued (in which case my BP is generally also pretty low). thought mine are more like the tremors some describe rather than a shaking. and sometimes i'll feel like i'm shaking, sort of "shaky inside" but not be visibly shaky to myself or anyone else....similar to tingling throughout my entire body that reminds me of the neuropathic sensations i always have in my feet & calves (& sometimes in my ands & forearms) but not exactly. when i have this it's usually first thing in the morning & may or man not last throughout the day. i don't think the "body tingles" have ever started any time other than when i first wake up though (although that may be in the afternoon!) i've had blood sugar readings down to 40 but never had shakes related to that (nor any other symptoms for that matter). i've never had a panic attack in my life so can't comment on any relation to that. nausea is a frequent companion of mine thanks to pretty over-the-top gastroparesis & pseudo-obstruction, but there's never been any correlation for me between nausea & any of the shivers or tingles. years back i would get pretty shakey - almost violently so - after fainting but at other times as well, enough that people thought i was having grand mal seizures (which i wasn't); thankfully i have't had those episodes in a while (one of the few things that's gotten better for me over the years..yippee!), but dr. grubb never seemed surprised by them being part of my "repertoire", so to speak, nor by any of the rest of my shaking, tingling, etc (nor have any of the other autonomic specialists that have crossed my path over the years). it's only been non-autonomic docs, i.e. epilepsy specialists, who have thought i must be having seizures and, upon realizing that i wasn't, decided the only alternative must be that i was nuts. all that said, the most severe shakes i've had are when a fever is taking root, but they are shivers/ shakes way beyond (in severity) anything else & bring with them high fevers due to systemic infection, so you'd know if that's what you were dealing with. melissa

i am NOT writing this to in any way minimize or discount all of you who have dealt with nasty reactions to cipro, other sulfa meds, or anything else for that matter. i just wanted to chime in so that, in case someone does a search on "cipro" down the road, they can see that not everyone has a bad experience and/ or that, despite nasty reactions, there are times in which docs/ patients may have to decide between weathering horribly unpleasant symptoms & not treating an infection that is life-threatening, such that the obvious choice would be to take the antibiotic. thankfully i haven't had any bad reactions to cipro or any of the sulfa antibiotics, taken orally, via my J tube, or intravenously MANY times over the years (for those who don't know i have a pretty crazy history of serious & quantifiable infections). generally speaking i'm not one that has a lot of trouble reacting to meds, antibiotics or otherwise. the last time i was on an antibiotic in the penicillin family, however, i started to break out in hives corresponding to my thrice daily dosing (intravenously). that said, i had a quantifiable infection in my blood stream that, via cultures, was shown to be resistant or otherwise untreatable by anything else. as such my infectious disease doc decided that we didn't really have any options, and also told me that i probably shouldn't add the med to my allergy list, b/c we'd hate for someone not to give me something i'd need in the midst of an infection that might be life-threatening. obviously my situation was/ is unique, and most people won't be dealing with systemic infections in the blood stream in combination with resistance to a good number of antibiotic options, but i still wanted to put it out there. all in all, while it's a good idea to be cautious & an EXCELLENT idea to not take antibiotics of any type unnecessarily, i also don't want people to be scared to the point that they refuse to take something that might be crucial to their health, or in extreme cases even survival. off my soapbox.... melissa