Sunfish

Pooh - first off, i'm glad to hear that you got to the store & aren't surviving on ramen (although the salt content sure is good!) secondly, i commend all the efforts you've made in trying to figure things out. i know how exhausting all the time on the phone can be with agencies & the like...i often feel like the calls i have to make for insurance & doctor & other things of the sort is a full-time job in and of itself. i'm not in your exact position by any means as i still drive on my good days, but i can relate to having to weigh the pros & cons of different options with limited finances. i'm having to make some health insurance decisions as well & know how stressful & confusing it can be; i'm especially finding it to be the case b/c there's no way to know for sure what my body is going to do in the near or distant future so there's no way to know completely what i'll be in need of. this is obviously the case for anyone but it's more so for special folks like us:-) i'm trying to figure things out in terms of hiring someone around my place for help with things i am not physically able to do & the like too...and it's SO hard in terms of money constraints. the catch-22 you referred to is so true. there is a huge gap of people who don't have the resources themselves but have too much to get the help otherwise. it's a huge social service problem in so many arenas. not that that makes it any better. just the opposite in my opinion. it makes it even worse but unfortunately there's no easy answer. when i find it you'll be the first to know:-) hang in there & good luck with all the decisions you're having to make. and good luck with the house sale. i'm sure it's stressful at the moment but in the long run it sounds like the move might be a positive? :-)melissa

julie - just wanted to tell you that i'm glad to hear dr. g has a plan for you & also to commend you for waiting on after your trip to go ahead with it...that seems really wise to me. i too am always weary of meds, sedation, etc, and have definitely had some bad experiences with it. but i have also been surprised at times when i've done okay so it is possible. especially if you are obcessive about making sure everyone involved knows what is up ahead of time. will it actually be done at MCO? (er...MUO....) do you think you would be able to talk to the NP you saw to discuss the med/sedation issue....it seems like she might be a good person to run things by? :-)melissa

lisa - i agree that you need to get to the doc. personally i have vision issues but they come and go. for me it's not with headaches but with other symptoms & has to do with my pupils contracting/dilating inappropriately. it also takes me longer than "normal" to change what i'm looking at, i.e. to focus, but it's the norm for me & has been for a long time so i don't notice it anymore. when i'm super symptomatic BP-wise though i have issues with blurred vision. i think the progression you've noticed, like your doc has said, means the doc is in order. i'm sure it is scary for you so hope that you can get in soon & that there are answers to be found. hang in there, :-)melissa

gena - almost forgot, but had to add that i'm glad to hear (& see) you survived the storm. bummer that you have so much clean up to do but i'm sure it's also a relief that it wasn't worse...

morgan - i stand corrected if you have the actual info in front of you. generally i know more what i'm talking about before i ramble on but in this case i was just making assumptions based on who knows what...too bad it's not the post i made at 3 in the morning or i could blame it on that? gena - going entirely off of what morgan posted re: interpretation, it seems that it must go up by 20 AND double. i agree that it's a bit odd, but that's what it seems to say. i'm definitely curious now to know what my results were on this test! about the test that i made sound so very appealing, i will say that the unpleasantness was short lived. they actually give you an injection & make sure you're back up to snuff before leaving & you're laying down the whole time. so while it wasn't grand, i felt very good about how it was done. and unlike my usual routine for tests that make me feel icky, i was fine when i left....no after-effects which is almost unheard of for me. so in that regard it was actually very easy/uneventful. later taters back at ya (i like that...have a college friend whose nick name was tater b/c she ate do many potatoes:-)), :-)melissa

hi becky - i don't have any experience with accupuncture (though i have considered it & would consider it in the future.) but...i just wanted to say welcome. sorry you have reason to be here but glad you found the forum. it's a great resource with lots of info & great people to go along with it. :-)melissa

hello- i am not on atenolol but was started on inderal, another beta blocker, so thought i would chime in as the lowered BP was also an issue of consideration for me. i actually take midodrine & mestinon in addition to the BB to help the issue. so the BB lowers my HR (and has done wonders in that regard) and the M & M (hehe) help to keep my BP up to a degree...my standing tolerance still isn't grand but my sitting tolerance has improved greatly. good luck, :-)melissa

i forgot my DYNA p.s. when i posted above. DYNA is great & i was actually a member until i missed a mandatory renewal when i was at vanderbilt. i then decided not to re-register b/c i felt like i'd pretty much outgrown the group. i'm not at all discouraging anyone from joining but just wanted to let you know that even though the age says 29 it's largely a much younger group and more kid and teen focused. it's a great organization though & i wish it had been up & running when i was first diagnosed. regardless of whether you join or not though there's a lot of good stuff on the site to peruse. you might even find some old poetry of mine if you look hard enough:-) :-)melissa

Gena - so glad to hear that your being away from the board was b/c of vacationing but so sorry you had to come home to boarding up your house. we got hit here in maryland in 2003 by isabel & it was nothing compared to what you all get but was still pretty incredible. i'm glad that you all are safe & hope that the waters subside soon. regarding the ACTH test result numbers, i'm pretty sure (but not certain) that the number is supposed to be above 20 as the end result (rather than go up by 20). so, yep, that would explain your "normal" result. mine was normal for that test too & i didn't feel a thing. my doc said only those with severe reactions generally feel something but that there are always exceptions; those who feel something but don't have abnormal results & those with abnormal results who feel okay. when i had the follow-up test (insulin stimulation) i felt HORRIBLE which was to be anticipated as that is the intent to a degree, even for those who end up having normal results. regarding the small dose of cortef i'm on, i wasn't put on it based on my ACTH test but on the follow-up test which was more specific. i agree that i'd much rather not be on it for life (as i'd like to not be on any of my meds but that's another story...) and like i said am going to ask A LOT of questions when i see my endo in 2 weeks in terms of long-term, doses, etc. i've been on it now for just over three weeks and the plan was to give it a trial run for 2 weeks to see if it helped anything for me. b/c there are some positive things going on i'm sticking with it at least until my appointment but we'll reassess then. i'll let you know if anything exciting comes up... glad to have you back & and to hear your safe even if wet & trapped. do you have electricity? :-)melissa

you all crack me up! things definitely change up and around for me on a regular basis. i don't think i flip back & forth between distinct body systems to quite the degree, but overall things are never constant. for me when one thing is worse something else will often follow, but in the recent past there's always at least something that decides to be wacked out. i do seem to have a complete on & off relationship going on between my food intake & my ulcerative colitis; i know that's not in the autonomic category, but the UC was grandly calm when my motility was so bad that i could hardly eat...now that i'm munching away it's not quite as happy. and yes, the moment i think i have some understanding of what might be going on with my crazy body, it never fails that something else fun comes along. wouldn't want me to get complacent or anything:-) regarding whether it means things are "getting worse" it could be a yes or a no. it may mean they're worse for a day or a week or a month but perhaps they'll be better a day or a month down the road. there are more uncertainties than anything with all this, including prognosis. my mom & i had some discussions about this with the folks at vanderbilt since my symptoms have accelerated greatly this past year, particularly in terms of involving other body systems, and there's no definitive answer. the popular verdict was that my symptom progression over the years does seem to have a progressive nature. and yet no one really knows. and even if it is progressive there's no way of knowing whether that means i'll be "stagnant" for 10 years and then have another rapidly progressive number of months, whether there will be a 20 year "break" or whether there will be a 2 month "break" of sorts. and of course there's the chance that i'll be 100% healthy and able to stand for hours this time next year. not likely, but not impossible. so....all that is to say that there's no way to know about the direction of things. i think it's worth some thought &/or discussion, but not so much as to get caught up in it. it's frustrating for sure, but unfortunately the answers just aren't there to be had yet. maybe someday... :-)melissa

em - first, you do NOT sound lazy. you articulated where you are very well & i think it's along the lines of hopeful realism rather than blind hope which can, as many of us well know, end up more frustrating than anything. second, i just HAD to respond to your strategy of ducking the other way to avoid the "what do you do" question. i hate it. b/c, like you said, there is A LOT we do. in all honesty we do more to a degree at times. i know i've had to work harder to a degree this year...to stay hydrated, out of the hospital (sort of), conscious, sane, etc....than any "work" i was doing while still working. if only i had the gumption to REALLY answer that question when someone asks. the answer would be....well, i take this many pills to be able to stand up & remain conscious, then i make my way to the bathroom and catheterize myself....wouldn't that floor them. hehe. i have a shirt from swim team in high school that says on the back "the body achieves what the mind believes." poppycock. positive thinking is definitely part of things, but if it were the only thing i'd be training for an ironman! :-)melissa

i was just curious in terms of the "why" behind the switch as i know so often med changes are made for insurance reasons and the like. so whether the change ends up being a good thing for you or not it is nice to hear that there was good intent & thoughtfulness behind it rather than just insurance regulations! personally i have never been on either med but have been on other SSRI meds (in the same family as paxil). i know there are many on here who have been on one or the other or both though with both positive & negative experiences. it's true that seratonin regulation seems to help many with autonomic issues but i know that wellbutrin has been helpful to some too. i'm also wondering how the switch was made...if you weaned off the wellbutrin gradually or just stopped? many here have had pretty major problems with symptoms when trying to get off of meds. i know when i've had to stop certain meds, either for changes or for testing, i've had a horrible time of it at first. the worst for me was going off of lexapro, which is an SSRI. but i'll stop my ramblings & let others give you some feedback... :-)melissa

heylo again.... you may also want to try a search on vertigo as i know there have been discussions on it in the past.... :-)melissa

hi rita!! i saw your name & then when i read your post was so excited to see that it was you as i doubt there are too many 26-yr old Ritas out there who have kids with the same names/ages it stinks that you have reason to be here (on the forum), but like i said when i emailed, there is a lot of great info & support on here...and great people to go with it. so...glad you made it. love & hugs & smiles & sunshine, :-)melissa (aka your roomie) p.s. about your meds...was there a certain reason that you made the paxil/wellbutrin change? our bodies can be SO sensitive to any changes so i wouldn't dismiss this as a possible culprit of the increased vertigo. on the other hand, i hear what you're saying about it not necessarily being the cause. that's one of the most frustrating things in my opinion...not being able to pinpoint the cause & effect of things. hang in there, and hopefully you'll get some good feedback from other folks on here...

morgan- i actually have been on ritalin, or rather concerta (largely extended-release ritalin), myself b/c of it's properties as a vasoconstrictor & some of it's stimulant effect. dr. grubb put me on it & i was on it for almost three years and while some of my friends might say i was bouncing off the walls b/c of how fast i talk, that was long before i was on the concerta i think it may have started to be problematic this past year when i was loosing a lot of weight as i was pretty jumpy/jittery at times & started to have sleep issues for the first time ever, & i haven't been on it since we re-did my drug coctail at vanderbilt, but it was the equivalant of magic for me when i first started it and for some time after...it raised my level of functioning immensely. so...that's a bit off-topic but i definitely can relate to your husband's experience! i have so many questions for my autonomic neuro & my endo & my doc at vandy, all who i'll be seeing over the next month...good thing they don't know or they'd be running! :-)melissa

well....if you asked my parents after this past week they would definitely say YES YES and YES. they were here helping me with packing & other things around my place that i simply can't keep up with physically & was quite moody all week. i think though for me it was & is b/c of the fact that the whole moving process is highlighting for me so starkly my limitations & i'm struggling with that, getting frustrated that i need so much help, feeling rather useless, etc....and then it ends up that i take it out on whoever is unlucky enough to be around. and for me it's not so much rage/anger but rather frustration & being upset...like i get sort of snippy and short with people which i absolutely hate doing, especially as they're helping me. i'm hoping that for me a lot of it passes when my current stressors die down a bit, i.e when i have a new place to live, get moved, etc.... i also see a psychologist though every so often & have been since my health totally wacked out this winter...pretty much just to vent about things. often he actually ends up telling me how well i'm doing with things, which can be a good thing to hear when i feel like i'm going off the deep end... hang in there... :-)melissa

icthus - you're doing just fine with the forum...no one would ever know that you're new to posting! dayna - i will say i'm a bit more weary about the chiropractic neurologist hearing he's not an MD...i don't discount the fact that some have had success with chiros but the name just seems a bit deceptive to me as a "neurologist" by definition is an MD. none the less, i see no harm in seeing what he'd have to say...short of your time & energy & money, which are no little things. perhaps you could keep it in your back pocket & see how the nutritionist stuff goes? again it might be confusing to be trying lots of new things at once in terms of figuring out what is or isn't actually helping.... in terms of the vitamins, i hope they go well but do be careful since you have issues with GP...that in and of itself could actually affect absorption as well. you're right that liquids will be much better in terms of motility but they can still be rough on the gut - especially potassium, so just be aware of that. in terms of how my GI issues are now on the up & up, it's a combination of meds and perhaps a bit of luck. but they're definitely better as i've been able to gain 20 pounds since the middle of may. i had lost 35 but don't need the other 15 back so am hoping my body evens out where it is now. although if it were a choice between eating & the extra weight i'd take the extra weight any day. i feel SO much better eating real food again. so...for my GI meds i'm on protonix & zelnorm, as well as reglan on occassion; i can't tolerate it on a regular basis but it's a good boost for me to have available. i'm also on mestinon, which was a surprising yet wonderful addition to my GI problem-solving. one of the most common side effects of mestinon is actually stomach cramps due to increased contractions that can occur as a result of increased neurotransmitter activity. i have had none of the bad cramping but from the day i started it (without actually knowing what it was as it was part of the med trials i was in at vanderbilt) my fullness & nausea was better. this isn't why i was put on it but several docs have concurred that it makes sense & i'm pleased as punch. so...the mestinon & zelnorm have, in combination, been my biggest boost in terms of GI motility issues. i'm still not 100% but there's not much i can't eat in small amounts & i actually get hungry again after having NO appetite for months. i was throwing up at least every other day for months & now it's been only twice in the past month. i realize that it could change at any time but i'll take it while i can! in terms of nutrition while i was doing so poorly, i had to be religious about getting in nutritional drinks or i would have ended up in much worse shape than i was. this way i was at least able to keep my nutrient intake up as much as possible since my food intake was so sparse. hope things go well for you with the vitamins & do keep us posted! i'm off to try to sleep again.... :-)melissa

morgan et al - isn't it funny how we (and the docs) get so used to tests being normal in the endless search for answers that we're surprised by the alternative? when i was in the hospital in november & every test that was done was showing something wrong (diagnosed with ulcerative colitis & an abnormal ovarian cyst) it was SO WEIRD. it was foreign to me to have the first test give a clear answer...usually it takes at least 2 or 3....or 9 or 10.... i don't actually know what my numbers were for the ACTH test other than normal. i see my endo on the 22nd so will find out then as i'm curious. for me it was the follow-up test that wasn't okay. i'll be curious to see if it's what your endo (when you see one ) will want you to do. gena, did anyone ever mention the test to you? i'm not implying it's something you should do but am just curious if your doc brought it up? i can definitely relate to the being tired of doctors... my doc actually stressed the lack of side effects from supplementation (with cortisol/ hydrocortisone) if you truly need it b/c then it is only replacing what should already be in the body. obviously anything one takes merits consideration, but the small dose that is taken if the levels in the body are low don't carry the same degree of side-effects &/or dangers of taking cortisone for therapeutic reasons (aka higher doses). i'm continually amazed by the many avenues there are to go down in terms of answers... keep us updated on when/if you talk with an endo... :-)melissa

linda- i'm feeling about three-quarters human at the moment, which would be improved if sleep were anywhere to be found after two useless hours in bed. thanks for asking! it does sound like you had a productive, if exhausting, visit. and it's always great when docs communicate/collaborate with one another. isn't it a shame that this isn't the norm? sorry that the MRI kind of has you hanging. i can't stand the waiting game, especially when there leading issues/questions, but at least there's a game plan to follow up. and i can see pros in either direction....if it ends up being nothing, then you can cross it off your list...if there ends up being an issue it could lead you to a successful treatment path which is always a bonus. and of course it would be too boring to have to wait on only one thing...i'm curious to hear of your EEG results too... glad to hear you survived your tilt...i hate them with a passion too (my HR on my last one was almost identical to yours)...and they always leave me down for the count after...i equate them to a personal torture device i'm lucky to have good veins for the most part...the only times i've had trouble were one time when i was REALLY dehydrated awhile back & this spring a bit b/c i was having to get blood drawn &/or IVs so often that my veins were starting to rebel. the rapid weight loss at the time probably didn't help either. i'm sorry you had such a rough day to travel on...i can't imagine how you made it through so congrats! i hope you're feeling a bit better now & will be able to rest up as much as you need now that you're back home. in terms of nausea suggestions, nothing carbonated is ever a good thing for me. but i've been in places where i can't handle anything too. mostly i try my best to keep really on top of hydration when i can so that i can make it through the bad spells. when the bad goes on & on though i've ended up with outpatient IVs as well as had to be in the hospital on a few occassions. and i'm super slow motility-wise from top to bottom so diarrhea is rare for me. i totally get the feeling of "i'll never be normal again" and oddly enough i'm doing my best to come to terms with it. not in a negative sense but in the way that by dealing with my reality - never losing the hope or possibility of improvement - i'm actually better able to figure out what i can do creatively in the here & now. in some ways it's defining a new "normal" for me. this is NOT easy but it's where i'm at with things these days and, on a good day, it has me in a better place than dwelling on how far from my old "normals" i am these days....my "normals" have changed a lot over the years, in both directions... hope you're recovering from & congrats on your intense week of investigation and the accompanying travels, :-)melissa

i've been in bed for over 2 hours and sleep is nowhere to be found so i figured i'd come for a forum visit... ernie- you crack me up! but yes, i too have issues with filling up the car, particularly in the extreme temps (hot or cold). sue - i've never described my GI symptoms as "gas" but i do have a lot of issues with fullness & bloating b/c of gastroparesis so that may be similar to some of what you're experiencing. i have slow motility from my stomach down with a bit of ulcerative colitis thrown in as a bonus and i definitely do notice a correspondence in symptoms. in other words, when my GI issues are worse my other symptoms are worse. and when my BP/HR/other issues are worse my GI issues tend to be worse. sometimes it's evident which is the cart, which the horse but not always. our bodies are just so interconnected that it makes sense to me that when one thing isn't happy, ain't nothing happy, ya know? i haven't had the squeezing feeling you're describing but this spring when i was in the worst shape of my autonomic career (hehe...my insomniac writings are creating new phrases...i didn't realize that i had an "autonomic career" but it sounds pretty spiffy) i had some really wacky symptoms in all different categories....for instance one night i had major swelling/lymphodema in one of my hands/arms, i had various odd skin issues, and lots of other fun...so nothing surprises me anymore. have you ever asked a doc about the arm sensations? hang in there, :-)melissa

melly- welcome. sorry you have reason to be perusing the web for medical info but glad you found this forum. it's a great place with lots of info & great people to go along with it. i'm sorry to hear that your son (and thus you & the rest of the family) are having to traverse the not always clear or friendly healthcare world but it does actually sound like things are at least being handled decently in terms of testing. the slowness of the process is frustrating but it is a start to know that the basic cardio tests are okay, and your pediatrician seems to be trying to find some answers. the tilt table test is the one thing that would seem to also make sense but if there are other avenues still being pursued it's not necessarily a must right now. especially if you already know there are issues with high/low BP & high HR, the tilt would likely give you more detailed info, but not necessarily a magic answer of sorts. still, i know that waiting for test results and any sort of answers is horrible; i can only imagine how much tougher it must be for your kid. one thing...what is VMA? i tried to look it up and only came up with Video Music Awards & Veterinary Medical Association...i'm guessing these don't apply you very well may already know this, but some of the blood & urine levels that when high are an indication for pheochromocytomas are also often high for POTS, although generally not quite to the same degree. so you're right to realize that pheo is only one of the options out there, albeit sometimes (from the little bit i know) it can actually be easier to treat than POTS. regarding the high & low BPs, there are many on this site who have fluctuations; it's true that the "classic" may be low for dysautonomia folk, but high, low, & everything in between is possible. while many (including myself) with POTS do have low BP issues &/or also have NCS/syncope issues, low BP is not a diagnostic criteria for POTS...it's more about the high HR and the change upon standing (& sitting when more severe). it's also "normal" for a kid's resting HR to be higher than an adults...i'm not saying that your son's HR is normal, but a HR of 100 isn't "as high" as it is for an adult. i can relate though as i was a teen when i started having my worst issues & was an athlete too, so a high HR was very odd for me. is your son's HR every lower, such as when he is laying down? and is it lower sitting than standing? the changes in posture & the corresponding HR can also be a part of the diagnostic &/or treatment picture... personally i generally have BPs on the lower side but have had occassional spikes in the other direction, particularly immediately after a black out (almost as if my body is compensating in the other direction after my BP has gone really low). the cold & clammy feet are very common territory for folks with any type of autonomic issues, often from either problems with circulation &/or sweating or any number of other things that no one yet understands. so....my VERY long answer to your questions is that yes, people with POTS can have high BPs. and that, yes, tilt table testing can diagnose this. but a positive/diagnostic tilt test would not exclude things that can cause POTS or other autonomic problems secondarily, i.e pheo, addisons, etc... hope something in my ramblings is helpful. one last thing is to tell you of a youth site that - if things end up going in an autonomic/POTS direction for your son - you'll want to take a look at. the organization is DYNA, for Dysautonomia Youth Network of America, and their website is www.dynakids.org. good luck & hang in there while you're having to wait. i hope you get some answers soon! :-)melissa

morgan - good to "see" you but sorry you've been having such a rough time of it...i'd definitely noticed that you haven't been around & was hoping you were okay. i'm a little confused by your testing saga, although i can definitely relate to having docs tell me my results for various things don't make sense, don't fit together, etc...don't you love it? it doesn't even surprise me anymore... but about the testing itself...i was looking through your earlier posts & couldn't find it (which doesn't mean it isn't there...sorry!), but what was the injection you received? and did your regular doc do it? i had any/all of my testing with an endo beyond initial bloodwork so that surprises me a bit but what do i know...did you had the basic test done which is the injection of ACTH? or the function test which is the insulin injection? my results to the first test were normal but to the second they are "parallel" to yours in that the #s are never dangerously low but the reaction was not right... i know it's easier said than done, but i would push for a consult with an endocrinologist. not b/c there will be necessarily be a quick fix (although that of course would be nice!) or b/c there's anything to be alarmed about, but just b/c you deserve to have the best understanding possible about what is going on in your body. if your doc is scared of what a new doc will do to you, maybe you could promise him that you won't embark on anything treatment or med wise without also consulting with him? hang in there & good luck! :-)melissa

sally - so glad to see & hear you "on the other side." i didn't post a reply to you before b/c my last colonoscopy experience was so horrible...i was already hospitalized b/c of GI bleeding & then the prep ended me up on the cardio unit for several days b/c my BP & HR were so wacky & i couldn't stay conscious while upright at all. i didn't think that would be too encouraging but was hoping you were doing okay. i agree that the prep is horrible...for me it's MUCH worse than the procedure itself. hope you come out of the wiped out aftermath quickly! :-)melissa

seems to me there was other discussion too, but here are two links that you might want to peruse: SSRI..how much are you taking? http://dinet.ipbhost.com/index.php?showtopic=2823 Depression & Anxiety, POTS - Depression? http://dinet.ipbhost.com/index.php?showtopic=2829 even aside from issues with meds, know that most if not all of us have had times of major struggle with the fact that things are taken away from us b/c of illness, so you're not alone there. at the same time i know that doesn't make it feel any better or easier....it still feels horrible & endless. but...with the corresponding med changes i would definitely at least pursue that route of inquiry... :-)melissa

LJ- just wanted to give you a virtual ((((hug)))). it was good to see your name pop up on the board but i'm sorry you're having such a rough time. i would say that anything is possible in terms of reactions to meds (or lack of meds)....true for anyone but even more so for us. in terms of different SSRIs, people have had such varied experiences with different ones so it's definitely something not to throw out immediately. there was a discussion recently and probably many others along the way, but in case you missed the recent one, i'll post the link as soon as i find it... keep on hangin in there & pop up on the board as you're able... :-)melissa