Sunfish

thanks amy i've have used some of the wet wipe things but still get pretty tender at times. i'm sure i'd be in much worse shape without them though! and i haven't tried the cottonelle brand so may have to put them on my list... melissa

tessa - i added your votes back in. i certainly cannot dance anymore in any sort of way that would be considered dancing. when i'm doing "well" i would be able to move a bit to a beat, clap, tap my foot, etc while seated (as i do this a bit at church at times when able to go....just recently been able on occassion for the first time in over a year. yippee!) but nothing standing as i can't stand for more than a minute or two regardless of what i'm doing. i might be able to dance for about a minute as i actually do better moving than standing still but that would be it & would be a bit tricky with all of my tubes & wires so in practicality not really. i did do some dancing at times in years following my initial dysautonomia diagnosis (diagnosis varied depended on what point in time it happened to be). i used to dance a lot via my involvement in musical theater & actually started fainting a few weeks before one of the shows i was in my senior year. at that point it was very episodic & i didn't have a problem with dancing in the show at all. in fact i tended to always to better the more i was moving. after high school any dancing was just social and not super often but as long as i wasn't in the midst of a flare-up of sorts i wasn't someone who struggled with exercise intolerance in my earlier years of diagnosis. it's still not the issue for me that it is for many; i just can't be upright enough and there are only so many athletic pursuits that occur from a flat/ reclined position. i rowed & ran years into my diagnosis & only even had problems when i stood still to stretch after, was waiting to carry the boat in, etc. even a few years ago i would have to use a wheelchair to get to the pool but could then swim a mile without difficulty. and honestly i still think i could swim some if i were allowed & had a pool that was easy to get to; unfortunately it's a no no with all of my tubes & wires. but i digress... my point is that trouble with dancing would tend to go along with exercise intolerance as it's certainly a type of exercise. a heart rate of 95 certainly isn't something that in & of itself should keep you from dancing but if you're feeling horrible that's obviously a different issue. with some limitations it's more about how you're feeling & the affect it has on you after the fact than about the actual numbers. there probably are some healthy folks who would have the same heart rate after a bit of dancing if they don't do it often as it's only 15 bpm higher than the upper range of what's considered a normal heart rate. this doesn't discount that you felt poorly but rather to hopefully reassure you not to worry about the number itself. i'm sorry that something you love so much is now so difficult. the fact that you weren't on your meds when you danced a bit though makes me wonder if it would have been better if you'd still been taking your meds. as long as you don't faint & your docs haven't told you that you have limitations in your activity level you won't actually hurt yourself by giving it a try again when you're back on your meds. i would just hate for you to limit yourself more than necessary & you never know. it may not be something you can do as much as before & you may pay a price afterward but it may be a trade off that is manageable to be able to do at least a bit of what you enjoy. any conditioning you are able to do - even while seated or lying down - may help a bit too as it will keep you in better shape. it won't change/ fix everything but it may help just a tad. hang in there, melissa

i've never taken xanax but tylenol doesn't have many cross-reactions aside from any meds (i.e. any narcotics, cough meds, etc) that would also include acetaminophen (the generic name of tylenol) as the liver can only handle so much of it (acetaminophen) at once before there can be real damage. obviously i'm not a doc or a pharmacist but i don't see that there would be a problem. here's a handy tool that you can use to check interactions as well: http://www.drugdigest.org/DD/Interaction/C...1,4109,,00.html. according to it there isn't an issue with xanax & tylenol but i thought i'd send it your way as it might come in handy down the road as well. i always read the full prescribing info for any drug i'm taking as that's the most thorough source of info re: interactions between meds & the like. not just the patient version but the full version that isn't always provided with the med. when it's not i look it up online and while sometimes it's easier than others i've always found it eventually. i know this isn't always a good thing for certain individuals to do as some can get overly worried about all the potential (but very unlikely) side effects & the like but for me that's not an issue so it allows me to know how i have to time my different meds, alerts me if there's something i need to stay away from with a certain med, etc. i don't study it thoroughly but give it a quick once over & refer back if/ when needed. if you're concerned i'm sure you could find the full info for xanax online as it would almost certainly indicate any potential problem with acetaminophen (tylenol) since it's such a common OTC med. hope this helps, melissa

lois - i was/ am particularly intrigued by your mention of reduced diarrhea since treating your deficiency. i don't doubt the correlation for you at all but was trying to look up if diarrhea could be a symptom & couldn't find it. just curious about your doc's thought on the correlation &/or if you have read anything on it? regardless i'm glad to hear it's helped you. how long was it before you noticed some improvement? i would LOVE something to reduce my diarrhea yet in relation to the rest of my health issues my docs don't seem to really care much about it, even with occassional leakage. i went from increasingly severe constipation for years (necessitating meds & suppositories at times to go at all) to the complete opposite wherein i've now had nothing but diarrhea for a year. the severity/ frequency changes a bit but it's diarrhea all the same. there have been lots of "reasons" offered that sort of made sense at the time, i.e. lots of IV antibiotics, tube feeding, some of my meds, etc. but none really make sense as they don't correspond with the timing of my dramatic shift. so who knows. as long as i'm continent i can manage but it's very bothersome & leaves my toosh quite tender at times (i finally told my mom that better toilet paper was a must!) other than running a few tests (c. diff, fat malabsorption), as long as my nutritional status & electrolyte/ fluid balance are okay my docs don't seem to think it's a problem. ah well. i know i've had Vit D tested along the way but will check into when it was last done. i know it was included in my multivitamin infusion during the year & a half i was on TPN & is in my tube feed formula now so am guessing it's okay but don't want overlook something that might possibly be a help to the ongoing diarrhea. thanks for the idea, melissa

p.s. bloating can also be caused by small bowel bacterial overgrowth (SBBO) which is generally something that happens in those with slow motility. there is a pretty easy test for this that a GI doc would be able to initiate. p.p.s. lactose commonly causes bloating in those who are intolerant. cutting out dairy for a few days would be a fairly painless way to see if this might be an issue for you.

hi lois - it's so great that you've seen some improvements already...congrats! sorry that you're having a touch time getting adjusted though...hopefully a better mask fit will help that for you. some have trouble even with a great mask fit but i know for me once my mask was good to go i didn't have any trouble at all so hopefully that will be the case for you. that may mean a new mask or perhaps just some adjustments to the one you already have. which one are you using? since you mentioned bruising i'm wondering if you might even have your mask adjusted too tight? it seems counterintuitive, but the seals on most of the masks actually work better a bit looser. just a thought... after a decent amount of trial & error my favorite mask/ headgear is Respironics' ComfortLite 2. it has three cushion options of which i use the "simple cushion". i tried other nasal pillow masks and more standard nasal cushion masks before this one without great luck. i had a lot of trouble with skin irritation/ chafing/ rashes as well as even the small sizes of some mask styles being a bit too big for my build. thankfully i was connected with a great sleep center when initially tested/ diagnosed that had access to some mask samples so i was able to try several masks without the constraints of insurance. here's the info on my mask (though the first picture isn't with the cushion i use): ComfortLite 2 http://comfortlite2.respironics.com/ "fitting guide" for the above mask showing the various mask options: http://global.respironics.com/UserGuides/F...ePatientCL2.pdf i prefer the "simple cushion" as the others tend to irritate my nostrils after more than a night or two. the only time i had to use a different mask was when i had an NJ tube in once at the hospital. we couldn't get it configured right so i had to make do with something they had. it would also be tough (as would any nasal mask) during a cold wherein one was badly congested on both sides but the one cold i've had since being on CPAP/ BiPAP seemed to alternate nostrils so i managed okay . but that's here nor there... i always use my own mask at the hospital (my old mask is packed in my ready-to-go hospital bag) & - as funny as it may sound - often get "compliments" from the respiratory therapists as most haven't seen a mask like mine. it was used for me in ICU when i was on BiPAP 24/7 as well so i'm SO glad i had something that fit well. it honestly may have been a contributing factor in my being able to stay off a vent. but that's another tangent... the other nasal pillow system/ mask i tried was Resmed's Mirage Swift. there's a new version out now (Mirage Swift II) but it looks very similar: http://www.resmed.com/en-us/products/masks...l?menu=products i loved the feel of it at first, the fact that i could slip my glasses on & off without having to take off the mask (i can't see the clock next to my bed so it's nice to be able to throw my glasses on during the night if needed without taking the mask off), it's not bulky, etc. i had some trouble with it leaking but the reason i had to scrap it was that after a few days i had a lot of trouble with irritation & a rash around my nares that kept getting worse. i was told it's a pretty popular mask though. i don't recall which specific nasal mask i used & i have only used a full face mask during the NJ tube situation. i think i have an extra set of headgear & some mask cushions for it that aren't my size/ style so since you're in the insurance bind maybe i could even send some your way. shoot me a note if you think that might be helpful. i'm not sure what size you'd need but i'll see what i have & could let you know in the next few days. you'd might want to wash the headgear (the fabric part) but it's in good shape & the masks haven't been touched. hope this helps, melissa p.s. i spent a bit of time at an apnea forum when i was first diagnosed & gleaned some helpful info re: masks (though largely via searches rather than participating myself). i'm sure there are others but http://www.apneasupport.org is one option.

lina et al - as others have said, it certainly may be dysautonomia-related for you. many people without any type of dysautonomia have various degrees of bloating though as well. many people do find that dietary changes are helpful though what is helpful can vary a lot from person to person and thus can take a lot of trial & error. if severe/ bothersome enough there may be some meds that could help too but certainly no magic fixes or easy answers in that regard. if the bloating is bothering you though (which it sounds like it is) it's certainly worth discussing with your doc. perhaps you could see if your PCP has any thoughts/ ideas and if that doesn't help pursue seeing a GI. it often takes some time to get in with a GI specialist if the situation isn't emergent so you could pursue an appt now, talk with your PCP and/or try dietary changes in the meantime and have an appt "on the books" if you don't find any relief. in terms of the specific relationship between bloating & dysautonomia there are two mechanisms that could be going on: 1. for some people GI issues can act up in relation to other autonomic issues acting up (i.e. orthostatic stress, tachycardia, etc) and will improve upon better management. i've heard (& experienced) this to be the case more so with nausea than with bloating but it's not out of the question. one non-technical explanation of this is that the orthostatic stresses take up a lot of your body's energy leaving less for concurrent digestion....sort of the reverse of why some people have a lot of tachy and/or low BP if they eat a big meal, lots of carbs, etc. 2. for others there is actual neuropathy in some or all of the GI tract to varying degrees. this is a type of autonomic neuropathy and leads to motility disorders including gastroparesis, intestinal dysmotility/ pseudo-obstruction, colonic inertia, etc (though these diagnoses can also be caused by muscle disorders so aren't always neuropathic in origin). these disorders can be mild or severe and of course the whole spectrum in between. bloating can certainly be a part of them. as i'm sure you know autonomic neuropathy can be the root cause of POTS as well as other autonomic disorders so in this case POTS may not be the cause of your bloating but rather both POTS & bloating are both caused by the same underlying problem, autonomic neuropathy. the two categories i used aren't particularly always clear cut, there can be overlap & interplay, etc. but hopefully some of the ideas within can help you understand some of what MAY be going on. i get severe bloating at times & in different locations, i.e. upper abdomen vs. lower. for me it's a part of severe dysmotility throughout my GI tract (worst in my stomach & varying degrees elsewhere) caused by autonomic neuropathy. i don't have POTS but rather autonomic failure/ systemic autonomic neuropathy; essentially i have neuropathy in every part of the autonomic system. i know that bloating can certainly be bothersome, annoying, & uncomfortable but aside from that it's not something i would worry about unless it's incredibly severe with an acute onset. for instance if you've never had a problem with bloating before & all of a sudden look pregnant, are in a lot of pain & haven't gone to the bathroom in days it may be something that requires more urgent attention. otherwise, though, it's more an issue of comfort, so try not to worry but don't hesitate to seek out ways that may make you more comfortable. i've found that a heating pad can be helpful; it doesn't fix anything per se but can feel good. hope this helps (and doesn't just thoroughly confuse you!), melissa

flop - thanks for the info. we were (yet again) posting concurrently . it appears that the half-life/ duration is the substantive issue in the preferred forms. fewer injections would be particularly helpful for those who have to get to an office for the injection (if not able/ willing to inject oneself) but it's nice to know that the preference doesn't seem to be an issue of medicinal efficacy. i'd of course love to have to give myself fewer shots too but am guessing the longer-lasting form is more expensive & as i generally have to either fight for insurance approval for injected meds or simply pay out of pocket (if the cost is low the fight isn't worth my or my doc's time or energy) it's not a switch that would fall high on my priority list at the moment in the midst of a million things. why my insurance makes a stink about paying a mere $4 for a bottle of B12 that will last me over three months when they wouldn't question someone giving me the injection in an office which would cost WAY more is beyond me but ah well. the mysteries of the health care system. melissa

firewoman et al - you may want to do a search on B12 as i think it has been discussed in the past several times. i have been on B12 injections for about 2 yrs now due to a measured deficiency, likely related to my severe GI motility issues, malnutrition related to insufficient intake, malabsorption, etc. i was then started on what is the most typical protocal (in the US at least) for B12 deficiency which is 1000mcg weekly (same as 1mg for anyone to alleviate confusion) for weeks followed by monthly injections. after about a month i did notice some improvement in my sensory neuropathy issues (numbness, tingling, burning, etc in my extremities). i still have it some but after starting the shots it returned to where it had been about a year prior and symptomatically that issue hasn't continued to decline like much of the rest of my autonomic/ neuropathy issues. so it certainly wasn't life-changing for me but it was VERY nice to have improvement in that arena as at least that symptom is generally an annoyance for me rather than intermittantly disabling (as it had been for several months prior to discovering the deficiency). my neuro (autonomic specialist) decided to increase my dose to 4000mcg monthly (or 1000mcg weekly) for maintenence to to perhaps help my autonomic issues further. that didn't bring any notable improvements but of course there's no way to know if i'd be worse off if we hadn't increased the dose & all of my docs agree that it certainly won't hurt anything and as it's quite cheap i don't see any reason to play with the dosing. during acute medicial crises, i.e. in ICU, a shot may get missed on occassion, but generally i give myself a 1000mcg IM shot weekly. b/c of limits on how much can be injected at once if i did it monthly i'd have to do 3 shots at once anyway so that doesn't really have an advantage (though it did initially when i had to get to the doc's office for the injection). cyanocobalamin is what i use & my understanding is that it is standard in the US. i've had numerous docs/ hospitals/ homecare companies involved at least peripherally since i've been on the injections & have never run across another option. i'm not losing any sleep over it but am curious about why it's not the preferred form in the UK? anything other than the timing issue? rachel i THINK that cyanocobalam is synonymous with cyanocobalamin but am not certain so don't hold me to it! i've never felt any different systemically after an injection - whether given to me by a nurse/ doc or by myself. every so often i think a nerve gets hit & it hurts more than normal but in relation to other injections i've been on over the years (WAY too many) it's a low on the bothersome scale (compared to procrit, heparin, lovenox, some vaccines, etc). i'm only occassionally sore/ bruised after, it doesn't burn going in (or after), etc. i honestly can't think of why the injection would bring on any sort of fatigue, though as flop mentioned i wouldn't expect most people to notice anything positive after one injection either. i realize that there are MANY things we don't understand though so don't dismiss the fact that the fatigue could be possible. the only thing that did cross my mind is the possibility that an injection could cause an adrenalin rush for some & that the fatigue would thus be a result of that rather than what is actually injected? hope my throwing this thought out there doesn't offend. i would see it as more likely if someone were particularly apprehensive/ adverse to needles but perhaps in those who struggle with frequent adrenaline rushes/ surges from many stimuli it could happen without any conscious knowledge? ok...B12 ramblings over.... melissa

happy happy birthday to the coolest mouse there is!!! i hope your recent infection realizes that it is NOT a welcome birthday guest & thus that you're feeling at least a bit better than you have been. and if you couldn't squeeze it in during your busy middle-of-the week schedules i hope that you & teri have something special planned for the coming weekend to celebrate your special day. and perhaps some special gluten-free treats from mr. ritt's? or whatever your heart desires all the best wishes for your birthday & the year to come... melissa & czar

mandasmom - welcome! feel free to post an intro in a new post on the main dysautonomia board. assuming that your intro includes something relating to dysautonomia it's certainly appropriate for the main dysautonomia discussion part of the forum (whether you have the dx, a friend/ family does, there are symptoms that make you think it might be an issue regardless of dx, etc). but don't feel like you can't include things other than just the medical stuff in an intro too. in short if a post has nothing to do with dysautonomia then it belongs in chit-chat, but don't worry too much about it either way as we (moderators/ administrators) can always move it if it's better suited to another locale. hope this helps. looking forward to "meeting" you, melissa

thanks for your continued words of encouragement, prayers, pics, etc. thankfully i'm home and still avoiding the hospital. yippee!!! and tea, i'd love to stay germ free but unfortunately all the infections i have are coming from within my own body so short of an out-of-body experience it's not going to happen we just have to keep working on how to keep the bugs in the right spots within my body & NOT in my blood, lungs, etc. maxine, ultimately there's nothing more than my cruddy GI tract that's thought to be a problem in regard to the recurrent sepsis. while no one can guarantee that there's nothing else contributing, i'm on the lowest PPI dose possible to keep my throat safe; there really aren't any alternatives for my situation & i had gastroparesis/ motility issues long before i ever took PPIs so they definitely aren't the causative factor. while i am aware of some instances where they can compound digestive troubles, i've talked about it with docs and it's pretty unlikely that it could have anything to do with the severity of my dysfunction. the severity of my GI progression also correlates with the deterioration of numerous other body systems. but onto today's update... it's a good start when my doc walks in and starts with "you look like crap", although when feeling so bad i'd probably prefer that to the opposite. chest x-ray did show pneumonia/ inflammation in my lower left lung - where the significant pain is - but not fluid to the extent that it requires drainage and thus hospitalization at this point. it was a pretty efficient visit wherein just over the timespan of the hour i got the x-rays taken, my doc came down to look at the films with a toradol shot in hand & talked to us there, & we left with a plethera of meds from my doc's supply & the pharmacy in the building....toradol injections that i can give to myself (i am more than happy to poke myself for the relief they provide), the antibiotic that i need for another week, an inhaler, & narcotic/ cough med mix that i'm to take whether i think i need it or not in order to help loosen up the crud in my lungs. i'm still hurting but the toradol definitely helped a lot so that i don't need to be quite as drugged on higher narcotic doses AND can breath a bit easier and less painfully. my doc thinks the pneumonia is related to the sepsis and the reality is that i'm a lot more susceptible to anything lung-related b/c of the severity of the pneumonia/ effusions/ atelactisis this past august when i was in ICU. so chances are no matter what we do preventatively this won't be the last time. thanksgiving plans are still unknown b/c while i'm feeling a tad better there's still no way i could travel at this point so we'll see how much things improve in the next few days. melissa

hi adria - so sorry for what you've been going through. i'm struggling more than my "normal" at the moment myself so am going to have to try to come back to respond to more of your GI issues but having had many PICC lines myself (so many that i'm no longer able to have one placed due to too much scar tissue) i thought i'd at least chime in quickly re: the site where your PICC was pulled. you really shouldn't have to do anything to it at all. though you may be left with a small scar it will heal more quickly than you can imagine. depending on the doc i was told to leave it covered (just a bandaid) for 24-48 hours and then just to let it be. many times i have had PICCs pulled while still hospitalized and they never did anything else either. i was never told to not put neosporin or anything else on it. neosporin can actually cause irritation at times so i don't tend to use it unless instructed to specifically; when i do use something i've been told bactrim is better as it has less potential for irritation. but that's here nor there as i've never left it on a PICC removal site. alcohol won't generally hurt anything but again, it's probably not necessary either. hope this helps. i'll try to get back to write more about some of the GI issues when i'm able.... melissa

thanks all. back with the current update. just got off the phone with my doc & it definitely is a GI bug again but - yippee! - is sensitive to the antibiotics they already started on (levaquin) so i at least won't have to go the hospital for that piece of things. and not even extra IVs. just ten days of meds through the J tube. so good on that front. the fact that it's only one bug (rather than 4, 5 or 6 as in the past) may be why i'm not deathly ill this time around but who knows. we'll have to have more discussion at some point about different possibilities going forward but 9pm when i'm hurting & extra drugged & my doc is at the end of a long day herself isn't the time. i'm glad i have an appointment coming up in a few weeks with the ID doc too as i'll be eager to get his thoughts on things. we didn't have any discussion about the port so - knowing my doctor - we're just not going to go there even in discussion unless things get worse and/or the infection doesn't clear, the fevers don't subside, etc. she & dr. g know as well as i do that it needs to stay in unless there's absolutely no other option. so i'm keeping the prayers, finger crossing, good thoughts, etc up in that regard. normally i like to discuss all options, what-ifs, etc up front but with this one i'm entirely fine with letting sleeping dogs lie unless/ until something dictates otherwise. i have to get a chest x-ray tomorrow & then stick around until she looks at it as there's a chance that it will bring l'hopital back into the equation. when i said to her "at least no hospital" on the phone after the bacteria/ abx news she was like "well, we'll see". she's going to give me a toradol injection while i'm there too which - if it is the suspected lung/ pleuritic inflammatory issue - should help the pain substantially. and if it does help & things aren't bad enough to dictate l'hopital she's going to give me some IV toradol for home too. for inflammatory stuff toradol is magic...it's essentially really hard core motrin/ advil. it doesn't have the icky aspects of narcotics but is WAY stronger than motrin/ advil so, at the risk of sounding like a druggie, i'm looking forward to getting some it in my system ASAP. unfortunately it can only be used for a few days at a time but hopefully the issue - whatever it is - will be resolved by then. melissa

as most of you know i've been battling recurrent fevers as of late, 8 weeks now as of yesterday wherein i've had at least a low grade fever all but about 5 of those days. all in all the thought has been - for various reasons - that it was a new part of my autonomic craziness and for the past few weeks we've been keeping tylenol in me during all waking hours. this has reduced the frequency of the higher fevers but about once a week i'll still get one in the 103-104 range. this past thursday it hit 104.6. on other days when it tops out at 100 it's tiring but tolerable; the higher ones are pretty bad. if anyone is really bored & wants to read more, my initial ramblings about the fevers (a few weeks back) are here: http://dinet.ipbhost.com/index.php?showtopic=9230 i had an appointment with dr. grubb on thursday & was interested to talk further with him about the supposed "autonomic fevers". in what ended up being a good thing my horrific chills started just before we were to leave the house (we're only about 10 min from him) so once the chills/ shakes calmed down enough to get me into the car we got there & i was still pretty miserable at 104. he had the lab run stat blood work on me to see what was up DURING a fever. the CBC came back pretty much right away and wasn't anything exciting as my white cell count was only a smidgen above normal...nothing anyone would bat an eye at. cultures can't be sped up but no one really thought they'd show anything so we were surprised to get a phone call on friday saying they were growing. again. so technically i have sepsis again, though obviously no where near as sick as the past stints. and what we know of the cultures so far points to it being one of the same GI bugs that have a been a problem for me before. ugh. dr. g & my PCP are trying to keep me out of the hospital if at all possible but there's a chance i may have to go in if we have to start an IV antibiotic that i haven't been on before (there are some left?!) or if it's one that requires more frequent monitoring initially. i should find out tonight or at the latest in the morning what the plan is. for now i'm on the hardest hitting abx that's doable via my J tube; haven't had a high fever since thursday but that's been the pattern lately so it doesn't really mean much either way, though obviously it's good things aren't any worse. the drug susceptibility testing on the cultures will dictate if we can get away with continuing this one or which IVs need to be added to the mix. right now i just want to KNOW one way or the other. obviously it's good to have an answer. and it's grand that it came without my first ending up in ICU as has always been the case previously. but it's disconcerning that the bacteria are still getting into my system. while knowing nothing was certain, we were hoping that getting me on enteral feeding (and off of TPN) might help with my intestinal integrity, i've been doing probiotics, etc. but obviously there's still something amiss that has just been kept more at bay. my biggest immediate concern (which is objectively a real issue) is the possibility of losing my port. while i'm doing okay on the tube feeding our attempts to increase the fluid volume haven't gone well so i'm still very dependent on IV fluids/ electrolytes to the point that i couldn't be sustained without IV access. we know from the last hospital stay that my access options for central lines are dwindling rapidly so it's not a good situation in that regard. i'm hoping & praying that there's a way to keep this line/ port but i know it's not a certainty & obviously if removal is necessary to get rid of the infection it's not optional. (the port isn't the source of the infection but rather an easy place for infection to settle/ hide once in the bloodstream). and....in case that's not enough rambling, i've got something else going on with my lungs that is pretty horribly painful. my doc wanted to wait to see if i had to head to the hospital anyway before sending me for a separate x-ray but the suspician is a partial lung collapse and/or pleurisy. i told my PCP yesterday that i've never had this specific type of pain before & her response was "no, you just don't REMEMBER it" as i've had similar issues during times where i've been too ill to be aware of or remember specifics. i've figured out one position in my recliner wherein - with lots of narcotics and shallow breathing i can tolerate it, get some sleep, etc - but it's pretty bad. i have some pain regularly but nothing even close to this degree. and ah yes, just found out that the pharmacy is out of the pain meds so i will be cutting it close until they come in the morning. yes there are other options but with the other craziness in the house (brother & grandma arriving for holidays, broken oven, etc) i'd rather not add something else to the mix as i should (just barely) be able to manage. and to think i used to completely refuse to take any pain meds! the infection & the pleural pain may or may not be related. the one is worse on paper but the other feels a lot worse in the moment. i can't even imagine what will happen if i get a high fever - or more aptly the preceeding shakes/ chills - while this pain is going on so i'm REALLY hoping that can be avoided. and who knows what will happen with thanksgiving as i was going to try to be heading to columbus with the fam to park on a new couch for a change of scenery for two days at the end of the week . obviously i'd rather not have to add on to my frequent flyer points at the hospital but at the moment i just want to know WHAT the plan is either way. okay...ramblings over. and i'm blaming any errors or more rambling than my normal on the drugs as we've almost tripled my dosage in the past 48 hours (WITH doc's blessing). of course all prayers & good thoughts are appreciated. i'll post or let someone know if i have to get locked up for a bit. last but not least, i know i haven't been nearly as active in posting on the board (though i still obcessively read EVERYTHING!)and i'm behind in replying to a good number of PMs from some of you & for that i'm sorry. i haven't forgotten & will write back as i'm able. and if i've missed something urgent don't hesitate to bug me again. love to all from the once again dirty fishbowl, melissa

just to clarify, i answered with the jobst ultrasheer specifically in response to what looked most natural. of the 6-7 types i've tried they would win hands down in that regard. they aren't, however my favorite in terms of comfort...specifically in regard to my toes (as mentioned by lthomas; i'm not the only one!!!). i much prefer toeless varieties in the comfort department which aren't available in the jobst ultrasheer (or at least weren't when i last could wear them). i too cut the toes off of an older pair or two though they tended to just curl a lot then around my foot so it wasn't ideal.... melissa

stacey - just REALLY quick i wanted to tell you (as i see you're still logged in) to keep checking back b/c i AM going to write out a reply & i'd hate for you to not see it. it's in my head & not typed out yet! later today or tomorrow hopefully... hugs, melissa

sophia - i'm too wiped at the moment to comment further on gluten free (though will try to return later) but i'm not sure why you're having trouble with the ritt's pricelist. i tried them in the past too & they were great (only not now b/c of not eating). the price list is a download but just a PDF file so not sure why you're getting prompted to download software, much less something that you would have to pay for. i just checked myself & it opened without a problem for me. the way it's formatted will make a mess of it in a PM or copy/ paste anywhere, but i'm happy to email you the file if you want to PM me your email. it's a PDF file so perhaps with a direct attachment you'd be able to open it more easily.... melissa

definitely "Jobst UltraSheer." i will add the warning that these tend to run a bit easier & are a bit harder to get on too, but other than perhaps at the toe they pretty much look just like regular hose. there are several shades & while i recall wishing there was one inbetween two that i had i wore them for years during college/ work years with fairly short skirts at times & no one would have known the difference. in regard to the shades, the darker tan/ beige was unnaturally tan for me once i was past my lifeguard years and the lighter was super pasty even for pale me. what i did at times when i really cared and/or was wearing something shorter was to wear the lighter support hose & then a pair of cheap regular hose in a better color over the top. i didn't do this often & yes it's a pain in the you know what but on a few important occassions it was worth the hassle.... hope this helps, melissa

"crashing" has been part & parcel of my dysautonomia journey since the beginning (quite some years ago now). while i definitely have "crashes" that seem to come out of thin air, if/ when i push a crash of some degree is pretty much a certainty. there have a been a few times that i've gotten away with things, but those are the exceptions rather than the rule. what constitutes pushing has been & continues to be very different at different times. years ago pushing might have meant trying to go out to dinner after work or not using my lunch break to lay down & rest (not necessarily to sleep but just to be flat). at times this past year it might have meant propping myself up in bed to brush my teeth. but yep, "crashing" is & has been a well-utilized part of my vocabulary & that of my friends/ family (in relation to me). the crashes vary in degree/ severity and if i'm just a bit crashed/ on the edge of a crash & keep crashing i'll be guaranteed to crash even harder later on. and the harder i'm crashed the longer it takes me to come out of that crash. what's "good" for me now would have probably been considered a crash for me years ago so i can't wait for my baseline of years ago to return, but after years of learning, trial & error, etc i'm pretty good at reading my body & knowing my limits at a given time. this doesn't mean i have any idea what to expect for the next day or even hour, but in the moment i'm a pretty good judge. in regard to if there are certain things to help, for me there has never been a way to avoid/ prevent a crash beyond not pushing in the first place. i don't consider this a viable option b/c without pushing & thus crashing to some degree i'd be a lot more limited than i already am. this doesn't mean i'm stupid about things (at least not usually), but i think it's about finding the balance...the fine line between pushing just enough but not too much. and to make it extra tricky that line tends to change a bit over time, from day to day, or even from moment to moment at times. chosing to push/ overdue with an expectation of crashing to some degree is part of my day to day reality (& obviously that of many others) but there are also many things that i can't do regardless of how much pushing/ crashing i'd be willing to put up with. but i digress. other than planning (as best as possible) & acknowledging one's limits (without being afriad to challenge them) the only other thing that comes to mind is to make certain to maintain what you know you need to do to keep yourself at your highest level of functioning. obviously it isn't a guarantee, but if salt & water loading are part of your regimen than it's important to keep up with them. same with taking meds, getting sufficient sleep, etc. in short, if you skimp on any of these things while pushing &/or while crashed it's only going to make things worse. with my ANS doc's okay, i've also had some short-acting meds that i could increase at times as needed (i.e. midodrine). this didn't prevent crashes but allowed me some ability to push a bit more at times for something particularly important (still knowing i'd crash after), helped me to safely make it through crashes (i'd still feel like crud but could get to the bathroom without fainting), &/ or helped with crashes due to fighting a bug. so this MIGHT be something that could be considered but ONLY via collaboration with a doc. and again...it doesn't fix the issue, just serves as an additional tool in dealing with it (at times). all in all though i think crashes - to some degree - are part of the territory.... hope this helps, melissa

amy - welcome home!!! i know that adjustments are hard (whether for keeps or just for a time) and i know that being home doesn't mean that all is well/ better, but home still a much better place to be so i hope you're enjoying that fact at least a bit. hang in there & keep on keepin on, melissa

i'm not if this might be what you're referring to when you describe headaches at the "back of the head", but for some of us with various types of autonomic dysfunction/ orthostatic intolerance, it's not too uncommon to get a certain type of postural/ orthostatic "headache" if/ when we're upright too long (either standing or sitting, depending on the person & severity of issues). it's thought to be related to cerebral perfusion, aka blood flow (or lack there of) to the brain, and is often referred to as a "coat-hanger headache" or "coat-hanger phenomenon". this description is based on the fact that the pain/ discomfort/ tension often begins at the base of the head/ top of the neck & extends to the upper shoulders, thus a shape similar to a coat hanger. for me (and i would think for most) these "headaches" aren't relieved by anything but lying down, aka getting flat. i tend to get these from sitting whereas with standing my body skips over them right to dizziness/ syncope (quite quickly at that, aka i can't stand/ walk for more than a minute or two). you may want to explore if your position has any affect on the headaches...not necessarily immediately but with some "recovery" time lying down would relieve the type i'm describing.... melissa

hi alexa - i don't mean to sound blunt, but if the urologist you saw dismissed the concern without any testing then s/he was being pretty negligent. doctorguest's questions are very important though b/c if the urine isn't getting to the bladder then it's a very different problem, i.e. kidneys (&/or other things) whereas if the urine gets to the bladder but then "just" doesn't empty then it's a bladder issue. i've had some acute kidney issues (in the midst of sepsis) but in general can't speak much to chronic kidney problems. if it's a bladder issue though i can fill you in quite a bit. there has been some discussion on the forum at times as myself & a handful of others have issues with retention, some having to self-cath. one earlier link is: http://dinet.ipbhost.com/index.php?showtopic=5974. my urology issues are thought to be part of my progressive neuropathy/ autonomic failure; my specific urology diagnosis is "neurogenic bladder" though this can mean a lot of different things ranging from incontinance to retention to some combination of the too. in very non-technical terms it's a diagnosis that encompasses many neurological-based bladder dysfunction. for ME though it's 99.9% an issue of retention & inability to pass urine (go to the bathroom) on my own. for about two years now i've had to self-cath, i don't feel any normal urge to go to the bathroom but do get lower abdominal discomfort if my bladder gets especially full (though this is more full than it's generally healthy for it to be on a regular basis), etc. i am able to go some without self-cathing by manually pushing on my lower abdomen in a particular way but i can't fully empty. being able to empty fully is important to prevent frequent UTIs. and furthermore, b/c i don't have normal bladder sensation/ urgency, if/ when i do get UTIs (almost a given at least on occassion for anyone who self-caths) i don't get the more typical symptoms of a bladder infection. i was diagnosed primarily via something called urogenic testing, though i've also had ultrasounds & a cystoscopy, done several sets of input/ output diaries, etc. the urogenic testing isn't the most fun but it's far from the worst testing i've had....wouldn't even come close to my top ten. it is something i would follow-up on further though....not an emergency but something that should be figured out as it could create further problems (i.e. recurrent infections.) hope this helps.... melissa

hi mary - while i can't say that the hose you bought yourself can't or won't help at all, in general the compression hose that most people find the most benefit from (and those that have been shown via research studies to be beneficial for at least some) are a type that are only available via prescription or online. they have a stronger compression than those one would buy "off the shelf" though i think i recall some saying the lesser variety helped them in "working up to" the prescription strength in regard to getting used to them. and the lesser compression may very well help some IF you have the proper fit. if the fit isn't right, particularly in the higher compressions, it can actually be detrimental to wear them. the best way to get properly fitted is through a medical supplier/ medical supply store/ pharmacy that carries prescription compression hose. you then need a prescription from your doctor specifying the compression strength (usually 20-30mmHg or 30-40mmHg), the type (waist high are best for most), the number, the diagnosis/ reason you need them, and the number you need. you can always get less than what the prescription is written for (in terms of quantity) but not more. you will then be measured for the best fit of a specific type of hose, may have some choice of color/ style (depending on where you go), etc. they may have what you need in stock or need to order them in which case you would get them in a week or two. these hose are significantly more expensive if you don't have insurance coverage for them but if you can swing it a good measurement/ fit is the best way to go for your first pair. after that you can order them online for much less (though still not cheap). all of that said, YES they do take some getting used too. but if they don't fit right (too big or too small) it will be that much tougher. hope this helps, melissa

thanks for the ideas flop. most are things i've been pondering & am sure i will be exploring them moving forward, particularly if the tylenol ends up being a daily staple. with occasional usage the cost wasn't something i ever thought about but in these past few weeks i started to notice it. i have tried one store brand of acetaminophen but it was significantly more viscous than the tylenol brand and thus was pretty tough to get through my J tube. it was doable but annoying and likely more risky in regard to the potential of clogging the tube too and, in reality, since it was a children's preparation, was hardly any less expensive b/c i had to use more of it than the adult preparation made by Tylenol. i'd be game for trying other store brands but i haven't come across any that are an adult preparation; as such i need a larger volume to get an adult dose and, in turn, the cost savings are little to none. i have a really good pill crusher (after MUCH trial & error) so as long as i'm not in the midst of spiking a high fever it's really not too big a deal...i have to crush my midodrine & domperidone 3-4 times daily anyway as midodrine isn't available in liquid & domperidone costs significantly more in liquid form (i.e. 10 times as much) and isn't covered by insurance (as it's not FDA approved in the states). some capsules empty/ dissolve well (& safely) but some don't; ffor instance i know my there are some extended release forms of acetaminophen in capsule form that wouldn't be a good idea. so while i'll probably continue to look whenever i'm otherwise at a pharmacy or store that carries a good stock of OTC meds, for now i'm probably going to go with the crushing & keep liquid on hand for emergencies (i.e. if i wake up with a fever) as i have it pre-measured in syringes so it's the quickest/ easiest to get in me. my mom isn't helpful (or comfortable) in regard to scouting things of this nature & i'd rather not waste my few trips out here & there on a tylenol search so we'll see. honestly if it can keep the fevers at bay & my liver can tolerate it i'm more than happy to crush the pills; the tablets i have on hand crush/ dissolve (after crushed) pretty well so it compared ot dealing with the fevers the hassle is well worth worth it. thanks again, melissa