Sunfish

hi deb - thanks for taking the time to give us your great update & congrats on how well you're doing! hope you're enjoying your health as much as you possible can! melissa

the digital thermometers are good...when they work. with a wacky reading, though, particularly one that doesn't seem to correspond to symptoms, my first thought would be to make sure it's not the thermometer. additionally, some digitals aren't meant for use under the arm so that may be an issue. is there a reason you can't take it by mouth? even if the thermometer is working well you may not be getting a good reading under the arm. and/ or even if she is technically cold under the arm but isn't by mouth (aka systemically) it may indicate a different issue (i.e. something with circulation) than if her systemic body temp is super low. i tend to run low (97) and have gotten down to 95 at times but 93 is really low so i'd definitely be concerned about the thermometer itself. we keep several in the house b/c if something's really off on ALL of them we know it's me and not the thermometer (i.e. the time i had 107 fever); they're not expensive (at least most aren't anyway) so it's an easy back-up to keep in place. i have a few thoughts if it does end up to be a temp issue (rather than a thermometer issue) but i'll wait for updated info before rambling on in that regard. regardless of the temp issue, though, sorry to hear that chrissy hasn't been at her best & hope she's feeling at least a bit better soon! melissa

hi michele (it's one "l", right? do let me know if i'm remembering incorrectly!!) - regarding brands, i don't think there are ANY masks/ machines that require the brands to match, so if you've been told that your mask has to be the same brand as your machine then i'm 99% certain that you're being fed a load of crappola. my mask(s) have been compatible with 3 different machines that i've used at home (my original CPAP, a portable CPAP i purchased to allow me to sleep on car trips, & my current BiPAP) as well as several different hospital machines at several different hospitals for both my normal sleeping routine as well as one stay wherein i was on BiPAP (& loads of oxygen) 24/7 as a supportive breathing device when i was in ICU fighting septic shock & multilobe pneumonia/ pleural effusions, which - just barely - kept me from having to be put onto a ventilator. when i'm not that ill the respiratory therapists in the hospital comment on & ask about my mask as hospitals don't tend to have a lot of variety in the mask department; they generally have older/ cheaper models as well as usually stocking larger sizes. so...i have my older (but still functional) mask packed in my "emergency hospital bag" as it's prevents my having to try to use huge masks that then have to be taped all over my face in order to even partially work (what i've been told they often do), which inevitably would then leave me with rashes/ blisters all over. not fun!!! but i have gotten WAY off topic. bottom line is that the brand of you machine/ mask shouldn't matter one bit. the equipment is all universal so aside from individual components of masks/ machines themselves you should NOT be limited by the brand of your machine. it's really deplorable if a supplier is giving you that incorrect info. hopefully just an innocent mistake but quite possibly more related to how much they make off of certain products, arrangements they have with particular manufacturers, etc. gggggggrrrrrrrrrrrrrr. but anyway... for your more specific mask questions i'm answering only in regard to my favorite mask, the ComfortLite II (the first one i have listed in my other post). the part of the mask that touches my face is a silicone-type material (not 100% certain if it's silicone but if not it's something very close!), as well as the straps which are a synthetic fabric of some sort. my skin tends to be pretty sensitive in general, and even more so on/ around my face and/or in any situation wherein i'm using a product repeatedly over a long period of time, but this mask has continued to be a non-issue for me in terms of skin sensitivity. every once in awhile i suppose i get a small bit of itching but not any more than i might get from a pillow/ blanket hitting me the wrong way occassionally; definitely NOT a major issue and not anything that i've even thought about or noticed until your questions got me thinking! and for what it's worth, the silicone (or silicone type material) on this mask is a bit softer, pliable, more "gelly-like" than some of the other masks i tried along the way. in regard to where on the face the mask hits, it depend on which of the three mask attachment options you choose. the one i prefer "hits" around what i suppose would be described as the outline around my nose? the other two options are different in that they hit in/ around each nostril individually which - for me - was more irritating; people have individual preferences though & it's nice that you usually can receive at least two of the three options to try out when you first order the mask. regarding your comment/ question about leaving the mask on when you get up to use the bathroom, i doubt leaving it on would help the situation much b/c the design of the masks doesn't permit for regular breathing/ airflow when it's not connected to a machine. while a short trip to the bathroom wouldn't likely be dangerous in the way that wearing the mask for a long period could be, it still might leave you feeling short of breath and/or a bit suffocated. i suppose it wouldn't hurt to give it a try but i'd be surprised if you like the way it leaves you feeling (though this may vary a bit from mask to mask). i can certainly appreciate the annoyance of sleep disruption that comes with connecting/ disconnecting from the machine. on top of the BiPAP i have several other machines that i have to unplug/ disconnect in various ways & then carry with me whenever to get to the bathroom and it really is a big pain in the you know what b/c it really does disrupt sleep in a way that's far beyond "just" waking up to use the bathroom. i'm a hard sleeper who generally falls asleep quickly & can sleep through most anything (with some exceptions, i.e. severe pain issues), and it's a bother to me; i can only imagine how much more of a bother it must be for someone who isn't as "good" of a sleeper as i am (one of the few things that my body - as long as my BiPAP is good to go - does well anymore!) sorry that i don't have any better suggestions to offer in regard to getting used to a mask in general; i consider myself lucky that - once i found the mask that worked for me - i was someone who had no trouble sleeping through the night with my mask/ machine going. i think part of it may have been that - without my machine/ mask - i was waking up almost every 10-15 minutes throughout the night, so my body wanted to badly to sleep & was finally able to do so that it didn't care about the new hook-ups involved. it's more common than not though to have some degree of trouble getting used to using the mask/ machine, so don't think you're on your own by any means. aside from making sure your mask is the best mask from you, something that is VERY important, and just sticking with it (as you seem to be doing), you might find some other discussion/ suggestions on the matter on an apnea/ sleep disorder forum. the one i used a little bit right after my diagnosis was http://www.apneasupport.org/ in case you're interested. i by no means did a study to find the "best" place for info, but it seemed to be an okay place. hang in there and let me know if i can help in any other way, including if you'd have interest in trying out any of my spare masks. melissa

p.p.s. i just saw your mention of congestion/ allergy issues in relation to a nasal mask. i have pretty constant congestion to a degree myself and - believe it or not - have actually found that it's LESS with nasal mask use. not throughout the day, but when i'm hooked up & for a bit after, i.e. when i first wake up in the morning. not sure if it's b/c the air blowing in is less allergy-ridden than normal room air or if it's just b/c the air stream is keeping me "blown out" so to speak, but there's definitely a difference for me, and my allergies are by no means improved. obviously we're all different, but just thought i'd let ya know...

sorry to be a bit tardy chiming in, but i'm pasting below a post i wrote a few months ago when lois/ goldicedance asked about masks. i'm currently a BiPAP user at 14/8. i started as a CPAPer at 7 (seems to be a popular number!). i tolerated the CPAP fine but my O2 stats are better on the BiPAP, likely related to my having some central apneas &/or the issue of breathing/ lung strength, i.e. my breathing is more supported with the BiPAP. here's my earlier post: 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. 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. hope this helps, melissa

you're probably going to want to slap me here (you have my full permission), but dare i say that your post made me feel good b/c it was something that hit home with me? i know it's pathetic, and a bit uncouth at your expense, but it's rare for things i'm dealing with these days to come up on the forum b/c (thankfully) not many others are dealing with the same sorts of things. so...sorry you're dealing with this of course, but thanks for letting me have a "me too" moment. and then i'm going to be bold and say somehting else to tempt you to slap me (if you haven't virtually done so already ). dare i say that i'm a tad bit jealous?? bare with me here. it's only that i've been dealing with fecal intcontinance for a bit now to varying degrees, and if i had to choose i'd take the bladder side of the incontinance problem any day as - on the unpleasantness scale - it seems a bit less gross to me. but i'm not for a second saying that either is nice. quick frankly they both stink (pun not intended, but fully appreciated after-the-fact!) my bladder actually can't empty without being cathed and i'll be honest that i'd much prefer that to having the incontinance deal b/c, while it has it's own issues, at least it's not as messy! nevermind that there are a million and one products designed for urinary incontinance issues and - i'm not kidding - hardly anything for what i'm looking for. obviously some are interchangeable, but nice way to make someone feel even more isolated, eh? have NOTHING available that's marketed for your need!!! on that note, though, i could probably write an essay right now on the various types of "protective undergarments" available so feel free to pick my brain for any suggestions (and where to find some good coupons/ sales). i've been trying a few different things out in recent months so can add some of my own commentary, though having a slightly different need only some of my thoughts would likely be helpful to you. there are way too many options to choose from and while it's rotten to need any of them in the first place, some are definitely better than others. and wearing them is lightyears more pleasant than the alternative (me needing to be hosed down & everything on & around me a complete mess), not to mention much more sanitary. too bad they don't make adult products that are a bit more fashion-forward (am i really using that phrase while writing about what are essentially adult diapers?!), but i'm serious! at least a color other than diaper white? like the kids's colored pull-ups or something?? ah well. back to something that matters a bit, i know you're pretty tiny these days yourself morgan, so FYI i've had problems with even the smallest size of some products being too big for me, which i'm sure you can imagine can lead to problems. i'm by no means large, but i'm not super tiny either...sort of on the smaller side of average i suppose? but anywho...my doc thought perhaps large kids' products might work for me but the mass-marketed kids items are toddler-sized & thus way too small; i did find some youth sizes online that are designed for older children (who need them due to disabilities) but in the meantime have actually found some adult smalls that fit me okay so i'm trying two varieties of those out at the moment. and hoping that i don't develop a skin reaction to any of the elastic/ plastics involved as i have a tendency to do just that with just about anything i use on a regular basis as i certainly don't need to add rashes & blisters to the mix! you really do have my empathies, sympathies, & anything else i might lend. i'm not exaggerating when i say that the fecal incontinance development/ progression tops my list in terms of one of the most difficult, horrendous, humbling, humiliating, embarassing things i've had to deal with as my health has declined. waking up covered with **** & not even being able to clean everything up on my own accord, including at times myself (at times when i've been in the hospital) is a level of modesty & humbling that i'm not sure i'll ever be able to embrace. and i will forever be grateful for the nurses/ techs who really go out of their way to make me feel like they don't hate the clean-up as much as i do (regardless of how they actually feel); it's horrible enough in the first place without having nurses/techs who accentuate it to the extreme by voicing their displeasure, ya know? but i digress (again...) i never thought that i'd miss my severe constipation and/or the frequent diarrhea that would wake me up throughout the night, but i'd take either gladly over what's going on (or rather not going on) with my body now. i'm thankful that i'm only dealing with one of my bodily functions not staying put as it's supposed to and hope that that remains the case for you as well. at this point i too have problems primarily at night. the problem started for me about two years ago but initially was very rare and/or happened during other acute situations (serious infection/ sepsis, antibiotic usage, etc) but now is almost a guarantee overnight regardless of what else is going on with me health-wise. i have a bit of leakage during the day on occasion and problems at times if i can't get to the toilet immediately and/or have acute illnesses/ antibiotics in my system, but when i'm awake i do usually have a bit of a warning (even if i then can't control what's to come) such that when i'm home, which is certiainly most of the time, i can usually manage decently. if i am out it's much safer for me to at least wear a bit of protection, i.e. a pad of some sort. i'm hoping i won't have to progress to the full diaper look 24/7 but realize that it's not unlikely to happen at some point so perhaps should start petitioning victoria's secret (or at least jockey or hanes?!) to some up with something more fashionable!!! i do know that i have - for the most part at least - a more supportive doctor set-up than you do, morgan, but know that i'm not getting much help/ empathy with this either. my docs don't ignore/ dismiss that it's a problem and sort of give a nod to it being another realm of my systemic deterioration/ progression, but there's nothing to really do about it either so aside to my making sure they remember it's an issue so that it can be included on the appropriate paperwork that ensures i can keep paying my bills there's really no point in discussion/ exploring it further. for me - though i realize we're sort of dealing with different specific issues - there isn't anything to do that won't hurt other issues to the point that they're off-the-table. my apologies to those for whom my post seems a bit over the top in the inappropriate humor department; i'm hoping that those who know me a bit better (that hopefully includes you morgan ) realize that it's a dark humor developed from dealing with things that would cause many to crawl into a cave, one of those "laugh to keep from crying" scenarios. and morgan sorry that my initial empathizing became more of my own vent. but thanks for hearing me out all the same. now i REALLY need to try to sleep b/c i have to leave for an appt in less than 8 hours. it will not be pretty melissa

i am a HUGE fan /advocate of swimming and/or any other type of water exercise, both in relation to getting/ staying as active/ conditioned as possible in the midst of dysautonomia and also b/c i've also been a fish. i too was very athletic in my "past life"...competitive swimming, rowing, long-distance running, triathlons, weight training, etc. i also coached & taught swimming for years, and i miss it all SO much. b/c i was able to keep up with athletics during my initial years of diagnosis/ fainting i really never imaged that i would have a life without frequent swimming, running &/ or rowing. they weren't just sport for me but very much therapeutic at times as well. but ah well. just one of the many ways i've been (and continue to be) reminded that i'm not the one in charge of my life. but i digress....now it's considered a good day for me if i can walk to the bathroom halfway down the hall rather than use a commode next to my bed, and at times in the past two years i've been lucky to be able to brush my teeth in bed, so pushing/ exercise/ conditioning can certainly undergo radical changes over time. i will echo many of what others have already said/ recommended. and i've written quite a bit in detail, as have some others, about different degrees of exercise/ conditioning that i've been able to do over my years in dysautonomia land as i've run the gamut at varying times. so....if any/all of those of you who are a bit newer on the forum i'd highly recommend doing a search on exercise, or on a particular type (i.e. swimming, pilates, etc) as you'll readily find a lot of past discussion on the topic. i've always been one to push rather than hold back, sometimes to the point of going overboard, but in many ways this has helped me stay as well conditioned as humanly possible in the context of my overall declining health. and my initial baseline combined with my efforts to maintain what i can over the years have likely kept me from declining more rapidly, so even as someone who hasn't gotten "better" with exercise, it's still helped me. so unless a doctor tells you something is an absolute no for you, i just really encourage you to push as much as you can to find what works for you. even if it's just something "little" for just a few minutes. anything is better than nothing. as a former athlete this may be tough for you to swallow; i know it was for me. it seemed almost silly to me to do anything for just a few minutes that seemed like "nothing"; even if my body was wiped out by it, i had a tough time getting past lining things up with what i would have considered working out in the past. swimming is grand if you can do it in any capacity. and you may be surprised at how good you feel in the water. for me it obviously didn't hurt that i was very comfortable in the water to begin with, but for years swimming was an escape for me in the midst of illness such that it was literally the only time i didn't feel ill. i would get tired/ worn out but not dissimilar to how anyone swimming might be tired/ worn out. i felt so good while in the pool that i had to be careful not to do too much b/c i would then be a mess once i got out and would pay for it for hours/ days after if i did too much. for me the balance was figuring out how much i could do without my recovery period extending from hours to days. quite literally, though, i was able to swim a mile at times when i couldn't walk more than a few feet. i would have to use my wheelchair to get to & from the pool but in the water i entered into a fantasy world of better health, if only for a short period. so it was a great thing for me on many levels. can you tell i miss it?? i haven't been in a pool now for over two years as i'm now dependant on various IV lines & tubes that make getting in the water a no-no, but i still dream of it, and swimming is tops on my fantasy wish list (ideally at a beach, but i'll take anything)! if you're not into swimming itself but the water still appeals to you, other water exercise might be worth considering too (water weights, water aerobics, water jogging/ walking, etc.) if swimming ends up not being your thing though, don't let yourself dismiss other possibilities solely b/c swimming "should" have been best (and thus letting yourself think that nothing else will work either). and yep, as rachel mentioned, grubb will definitely tell you to exercise. obviously there is a fine line to pushing to far, but in general your heart racing isn't a reason not to exercise so try to draw from that athletic mentality from your healthier days to push yourself to the max of what you can do now. i'm not trying to minimize how bad you may feel at times, just encouraging you to push through it to some degree b/c that may ultimately help you to feel better. hope this helps, melissa p.s. another thing that has helped some people feel safer in pushing to exercise is participating in a cardiac rehab program. there are different types/ levels of these but it's something else you could do a search on to hear of others' thoughts/ experiences and/or is something you could ask your doctor about (as you usually need a referral).

hi joe - there's some help regarding doing just what you're asking about under the "helpful hints" section that is pinned at the top of the forum. here's the direct link: http://dinet.ipbhost.com/index.php?showtopic=5555 and the subsection you're looking for is "adding an avatar" or something close to it. it's probably somewhere between the middle & the end of the many hints/ suggestions included in the post (though the whole post is worth at least a skim if you haven't already done so.) give yourself a bit of time/ patience with the instructions/ suggestions listed. they're fairly straightforward but the smallest error/ typo in computer land can scratch the whole thing so just take your time with it. most people are able to figure it out but if you still have trouble let us know & someone can try to help you further. hope this helps, melissa

hi danielle - welcome! obviously sorry that you have the need to be here in the first place, but glad you found us considering . and glad that you were one of the lucky few to come upon a diagnosis fairly quickly. i don't know dr. boehm personally but have heard very good things about her over the years & had a home care nurse once who worked in her office. i live in the toledo area myself so am very close to your doctor. there aren't any active support groups in northern ohio (eastern/ cleveland or western/ toledo areas) these days. there was one in toledo for several years but it sort of fizzled out; i actually wasn't living here at the time (was in baltimore, maryland) but attended once when home visiting my parents. when i was living in the cleveland area a few years back i tried to organize meetings there and while there was initially a LOT of interest the attendance was a bit more mixed. we had two meetings - one on either side of the cleveland metro area - and at one meeting we had a worthwhile turnout of around 8 but at the other there was only myself & one other person. i would have probably tried to consolodate & have a group continue to meet every so often but due to continually declining health i actually had to relocate back to toledo such that i wasn't able to help with any cleveland area organization. no one else picked up the reigns so that was the end of that. while there aren't any formal support groups in toledo i've had the pleasure to meet a decent number of people who travel here to see dr. grubb who, if you're not aware, is also located in toledo & is considered to be one of the top autonomic specialists in the country & even world. some of these meetings have been planned & some are just good "luck" of meeting at the doctor's office while waiting. face-to-face support groups often do sound appealing to many and definitely have their advantages but in practice i know that many people on the site who have tried to organize even one-time meetings have been disappointed with the turn out after putting in a good amount of planning. a large part of this may be b/c of people's unpredictable energies/ health. i do know that many people have had great experiences planning to meet with a few people who are close to them geographically (or in relation to doctor appts). i've met more dysautonomia folk now than i could even count in the years since i was diagnosed (conferences & by way of living in several locales & attending some meetings/ conferences) but i still remember the first time i met others who could "get it" and how neat that was so it's definitely a worthwhile venture if you can make it happen in some way, regardless of whether it's any sort of organized group. i now have more than "just" autonomic stuff going on & know that i'm hoping & praying to someday meet one or more people who share some of my current struggles. i wouldn't want to scare you away with the complexity of my health situation so don't know if i'm someone you'd particularly want to meet but i am in toledo so if you'd be interested feel free to send me a PM in regard to when you might be here next for an appointment. but anyway....that's way more of an answer than you were looking for i'm sure. i'm one that doesn't post near as much as i used to but when i do chime in can still ramble on quite readily!! hang in there, melissa p.s. jazzy/ sher...what part of northern ohio do you hail from??

p.s. in my mentioning of a sleep study, i realize that you had one done recently. mostly i was meaning that if the new symptoms you had this morning continue that it might be something new that merits additional evaluation. not now but just as a possibility in the future. p.p.s. i can't recall what new meds you may be trying at the moment but some meds can also - in effect - "cause" sleep disturbances that wouldn't have been there otherwise in some people. obviously seizures can be triggered by meds too, either individually or in combinations, so if what happened doesn't end up being a one time thing i'd definitely look at any med changes. metallic taste can also be a side effect of various meds.

i'd vote on it being more sleep-disorder related than seizure-related, but the seizure possibility doesn't sound impossible. also possible to be related to blood pressure &/or oxygen saturation problems. i agree that it's not an emergency since it passed though understand why you're uneasy not knowing what it was and if it might happen again. glad to hear the scheduling hassle got worked out for the EEG your docs want done but as others have mentioned one EEG won't necessarily rule seizures in or out. the only time an EEG is foolproof in ruling seizure activity in or out is when it's done during what is suspected to be the actual seizure. that said, there is some truth to what you heard regarding the possibility of "catching" something abnormal within 24hrs of suspected seizure activity. it's by no means a certainty, but for some people and/or some types of seizures abnormalities can appear in the hours following a seizure even when symptoms are gone or all but gone. but even if something abnormal showed up on an EEG now it wouldn't be certain that it was related to what you experienced earlier. there would be a chance it would provide clues of some sort but very unlikely any definitive answers. so...bottom line is that unless the symptoms return & don't abate on their own i don't think emergency evaluation would accomplish anything. i obviously hope that this is a one time fluke but if it's not and/or if your docs are truly concerned about seizure activity on an ongoing basis the only definitive answers will come from having an EEG during or immediately after the suspicious symptoms occur. for some people this unfortunately means having to do continuous EEG monitoring on an inpatient basis in order to "catch" the suspected seizure activity but that's certainly not done unless absolutely necessary. a sleep study could also provide insight to what's going on if it recurs. though not as detailed as full EEG monitoring/ testing, sleep study monitoring does monitor some brain wave activity, almost a "mini EEG" of sorts, so that - amongst other things - it would show abnormalities if a true seizure occured during the testing. and of course it would also help diagnose sleep paralysis, various sleep stage disorders, and/or other possible sleep-related problems that could be the cause of the symptoms you experienced. hope this helps, melissa

without knowing your specific situation it may be a reasonable thing to consider. here's some info on it (from DINET's "what helps" section): http://www.dinet.org/what_helps.htm. you'll have to scroll down a bit to find it, but may also be interested in some of the other listings. there are some members who have tried it, some who have found it has helped. BUT - that said - it would still be a good idea to talk with your doctor before trying it, particularly if you're on any other meds. just b/c something isn't a prescription or is more "natural" doesn't mean that it's benign. it can still cause problems, side effects, have interactions with other meds, etc. hope this helps, melissa

without wanting to alarm you, sudden/ temporary loss of vision can also be a symtom of problems in the retina. this can be the case even if the issue resolves but can be a warning prior to it happening again and possibly not resolving at some point (i.e. retinal detachment). so a check up at the eye doc might also be a good idea. melissa

it seems that some people are replying about their actual nails whereas others are referencing their nailBEDS (under their nails). nail health/ condition is more often related to nutritional issues/ deficiencies. nailBED color/ health is more often a circulatory issue. these are generalizations, & of course some perfectly healthy people have icky nails, were you trying to ask more specifically about one or the other (nails vs. nailbeds)?? melissa

as flop foreshadowed, i have lots to add (what a surprise!), but it'll have to wait until at least tomorrow. feel free to bug me if i forget to come back & add my ramblings. melissa

i haven't been able to be online today at all (actually NOT b/c of health crisis for once!) but noticed your post & promise to come back & write more later. my dx is systemic autonomic failure/ progressive autonomic neuropathy which, as i'm sure you've noticed, is the minority on the board. hang in there, melissa

hi jennifer - ports & PICC lines are two types of central intravenous catheters. they, in addition to another type called a tunneled catheter (more often known as a Hickman or Broviac line) are the most common options for long-term IV access and/or in any situation where peripheral IVs aren't an option for whatever reason. they are needed/ used for various reasons & the different types tend to be preferred for different reasons, though there is certainly some overlap. they all have their pros & cons. any indwelling IV line brings with it an increased risk of infection, and - even if the line isn't the infection source - if there is infection elsewhere in the body the line most often becomes infected as well & has to be removed/ replaced. central lines are needed for certain types of infusions that are too caustic for perpheral lines. certain drugs (some antibiotics, chemo, etc) as well as intravenous nutrition (TPN, "total parenteral nutrition") will essentially "eat" peripheral veins such that central vein access is necessary. other people need central lines not b/c of what is being infused but b/c of the frequency of infusion/ blood draws &/or b/c their peripheral veins can't tolerate the frequency. in critical care situations central lines also allow for greater volume of infusion very quickly, aka a liter of fluid in an hour, which can't be done via a peripheral vein. central lines also last longer than peripheral lines & are considered "sturdier" such that they may allow someone to receive certain treatments at home that would otherwise require hospitalization. there are other reasons for use as well, but those are the "biggies" so to speak. most of the lines can also be used to draw blood, though there are some exceptions. for a bit of info on the three types of lines.... a PICC line is the easiest/ least invasive to place. PICC stands for "Peripherally inserted central catheter" and the name is fairly self-descriptive. a PICC line is placed into the arm through a peripheral vein & then tunneled internally into a central vein. most often they can be placed bedside by a specially trained/ certified nurse, though some more difficult placements may be done in interventional radiology settings. only local anesthetic is used (a shot in the arm) & the placement usually isn't too painful (though this can vary a lot depending on a wide variety of factors). PICC lines are the shortest-lasting of the central lines. the length of use is a bit up for debate as you'll hear/ read anywhere from 3months to a year even amongst the "experts". there is some indication that PICC lines get infected more readily than other central lines but also that the infections are more likely to remain localized rather than evolving into systemic sepsis (b/c of their placement being in the arm). PICC lines are generally the first choice for anyone expected to need a central line for a shorter time period, i.e. IV antibiotics for a few weeks. if someone is hospitalized & there is continued difficulty with drawing blood &/or IV access a PICC line may be considered for the period of hospitalization. if not being used a PICC still requires flushing at least daily, and it can't get wet (so must be wrapped up for showering). a port (port-a-cath, power port) requires surgical placement & thus sedation or anesthesia so is obviously more invasive. in a best case scenario a port can last for years, though this is by no means a certainty. the most common/ known use for ports is probably in cancer patients requiring ongoing but intermittant IV treatments, blood draws, etc. ports are implanted under the skin, most often in the upper chest area (with a catheter that threads into a central vein), so that when not being used ("accessed") there is nothing external. usually the only evidence is a bump under the skin and/or the scar from the initial placement. if not being used a port only requires care on a monthly basis and there are no restrictions on showering/ bathing/ swimming. in order to be used, however, a port must be "accessed". this requires the placement of a special needle (known as a huber needle) through the skin & into the hub of the port, aka a big poke! for those requiring daily infusion(s) this needle can be left in place for up to a week at a time, at which point is must be changed. when accessed the area must be covered/ wrapped in order to shower just like any other external IV line. some people (me included) learn to access their own port while others would have a nurse access. a tunneled catheter (Hickman, Broviac) is external (like a PICC) but generally placed in the upper chest (like a port). the advantages/ disadvantages follow suit. they are generally more invasive to place/ remove than PICC lines but less than ports, longer-lasting than PICCs but shorter than ports, etc. there are some other types of central lines, most often used in critical care situations, but they aren't generally used outside of a hospital setting. they usually aren't intended for more than a month of use and they aren't too practical for someone who is mobile, even if only to sit up in bed. i have scars from one of these lines in my neck that i call my "vampire bite". (yes, i have a dark sense of humor at times...) i've had all of the above in varying quantities over the past few years and b/c of scarring (due to having needed so many lines) am now running into trouble with their placement. i wouldn't be alive now without my "lifelines" but they're not without their own troubles. ok....class over. probably much more info than you wanted/ needed! melissa

the first thing that comes to mind is low potassium, though that tends to cause cramping in larger muscles, i.e. legs. i wouldn't worry about it, particularly since it's an on/ off thing, but would definitely mention it to your doctor as you're planning. melissa

heya amy - ((hugs)) i "get" lots of what you're dealing with all too well & am so sorry you're dealing with it yourself. hang in there the best you can...i know it's often easier said than done. thanks for checking in with us. melissa

congrats!! i consider it a given that none of us wish we needed it in the first place, but with that said i'm sure you're breathing a sigh of relief. i'd been wondering if you'd heard yet so thanks for letting us know!! melissa

hi jennifer - good to "see" you & to hear that you're doing relatively well. very cool that you were able to do the disney trip. since you asked, the short version is that i'm hanging in okay at the moment. the long version is, well, much longer some things are "better" at least for the time being but still a lot of undercurrents that don't bode well moving forward. i realize that's incredibly vague but don't want to take over your thread with the long version. it's nothing really new or exciting though. i'm in the midst of an update for my website so if you check there in the next week or so you'll get more of the scoop. thanks for checking in with us. people tend to disappear when they're on the upswing. melissa

amy et al - to the two of you who just posted for the first time , welcome & THANK YOU for taking the plunge into posting. it may sound a bit strange, but reading this discussion thread gave me that "me too" feeling that brings most people to the forum for the first time in quite awhile. i know that's what brought me here years ago, but as much as i love my DINET family the "me too" factor isn't something i feel too often here anymore. so as pathetic as it sounds i almost got teary eyed when i felt it again last night. amy your brief description of your health situation had me saying "that sounds like me" in many ways as i'm also in the land of non-POTS (though as you said many things are very much the same). i'm not on oxygen at the moment but have been at times and have plenty of other tubes & wires & lines that i'm hooked up to around the clock. i too tend to push the envelope rather than airing on the side of caution, and i've been deemed "too sick" to qualify to research protocols. your statement of "it's complicated" sums things up pretty well so i'm sure you get the idea . i'm glad to have you here & priscilla you as well...i took a brief look at your website last night & would have liked to read more but sleep was long overdue! but on to the high BP question... i just recently have entered into the realm of high BP in addition to low. i've generally had low BP - extremely so at times - for the more than ten years that i've had a dysautonomia diagnosis of some type. over that time i've had higher spikes occasionally but never sustained higher numbers. but the past few weeks my numbers have gone through the roof. the nurse who first caught this at my PCP's almost went through the roof herself as she couldn't believe i could have numbers that were more than double (& almost triple) my "norm". like you amy these numbers have increased the time i'm able to sit, but standing/ walking still brings a plummet so it's a matter of trying to balance the two. i haven't been taking my high dose of midodrine (15mg 3-4times/ day) but unless i'm over 190 & symptomatic (i.e. headache) i'm not taking anything to lower things either. since this is a newer development for me we're sort of playing it by ear. my docs who are most in the know re: my autonomic craziness don't seem to be too surprised by the change as it's just the flip side of my ANS being horribly out of whack. while the sustained higher numbers can cause their own problems i'm loving the fact that they are improving my functionality, if not necessarily my underlying state of health. and my docs don't really want to mess with anything that is helping my quality of life at the moment. as my PCP put it, there are a lot of other things that are going to kill me before high BP. if i haven't mentioned it before, she's not one to beat around the bush . but while he's not quite as blunt, ultimately Dr. Grubb (who i saw this past week) agrees. that's all for now, melissa

maxine - i know that you'd still like answers, but i'm sure you're relieved to know that MS is off the table. and i'm glad the doctor you saw was supportive & validating rather than an added stressor for you. hang in there, melissa

as this is an old poll it wouldn't make much sense to add other options at this point. you are welcome to create a new poll yourself (anyone can do so at anytime) including anything you'd like. if you need help or have trouble along the way let me or one of the other administrators know & we'll try to help. :-)melissa p.s. i know there have been discussions & possibly a poll re: age &/or age of onset sometime in the past several years. doesn't mean you're not welcome to bring it up again but thought i'd let you know in case you'd like to do a search.

so sorry to hear this. i'm sending lots of prayers... ~melissa