Lulu

hey y'all, after being "relatively" well controlled by meds for a little over a year (i.e., BP 110's/70's & HR in upper 50's/low 60's) i even actually began exercising again recently w/o problems.... However, since friday or so, my BP has been skyrocketing even with laying down & HR is tachy with sitting or standing. [um, i need a "POTS" emoticon, here.] i feel like i'm shaking on the inside, like butterflies are trapped in me, and i'm passing out right and left. and anxiety?? omigosh, i keep thinking i'm having a heart attack from the chest pain. dizziness, all the symptoms. this hasn't happened since before i was dx'd and got on meds--years and years ago!! i have the hyperadrenergic type of POTS so i have HIGH blood pressure, generally speaking (or did, until the meds). i'm on an incredible amount of heart meds and have been for years... (i'm maxxed out on almost everything now) which i've been OK with, especially since they seemed to be working so well. or so i thought. i don't know how it's *possible* for my BP to be as high as it is now with all the meds i'm on! i've had some stressors recently (sickness, insomnia) & i know that these are *definitely* having affecting me....but my question is do you think this is this most likely a phase, a response to situational stressors? (i know you all aren't docs, just wondering about your experiences....) what can i do to help this process along, if anything? i'm calling dr. grubb's office today, btw. <cross fingers to get return call> how unusual is it for someone to go from relatively NO symptoms (or very well controlled) to full-blown in less than a day? is this a typical POTS hole for us? POTS is NOT progressive, generally speaking, right? gosh, you'd think i haven't had this dx for years, but it's been awhile since i felt THIS bad! lol i'm feeling frustrated, scared and clueless. & crappy from pots and ncs. & generally crazy, as usual. thanks for listening. i appreciate any ideas at all!! i'm freaking out, school starts in less than 2 weeks and i can't even stand! yikes!

hey sonotech, just another message here to you to send my best wishes for feeling well and a speedy recovery!! thanks for keeping us posted, morgan! everyone take good care! lulu

i've had this too, and feel short of breath. it is not a pleasant feeling, that's for sure. i'm glad it only happens to me every once in a while. hope you are feeling better ??

glad you survived another idiot! good job to have your leaflet (safety net) with you!! [my luck, i'd bring it and they'd think i printed it up for fun! since i just love being at the hospital.....] i hope you get to feeling better very soon!! darn UTI's! ouch! take good care! lulu

i hope you feel better soon, melissa! down enzymes! bad enzymes! DOWN DOWN! (hey it works with my dog? lol) hang in there through all this and keep us posted. we're all rooting for ya! bright blessings, lulu

hope the pacer helps you feel better, morgan! good luck and keep us posted!

my allergy to peanuts started off like that....slow...slow...slow and now if my husband eats a pb & j and kisses me, my face gets tingly! there's other stuff that i'm overly-sensitive too, smells especially, but peanuts elicit an actual allergic reaction. i agree with the other posters, i don't know if it's related to the MVPS (but many of us here have lots of "sensitivities") it does sound like you should check with an allergist. i've also heard about something called something like (sorry, POTS fog...) chemical sensitivity syndrome? maybe it's something like that? [i'm probably way off base, here, i can't even remember what it's called] anyhow, i hope you get some answers and some relief soon! good luck!

hey y'all- don't know if i overdid it, am having "monthly" related stuff or am actually sick or it's "just" POTS? i'm aching EVERYWHERE like never before--i mean it really *hurts,* seriously--and nothing seems to be helping...i've tried stretching, a "warm-er" shower, advil...no luck. i'd appreciate any ideas! anyone???? thanks! lulu

i also pay when i "overdo" it, and that varies from day to day, seemingly with weather, diet, stress. some days i don't have the fatigue at all, other days i can't even get out of bed to save my life! some days i can work 7-8 hours, some days a flight of stairs is out of the question. the inconsistency and seemingly w/o rhyme or reason of this stuff drives me bonkers! it is so difficult to gauge when is going to be a good day or bad, and how much is too much....and will lead to severe paying for it. does anybody else's fatigue amount vary day to day?? or am i the only one?

welcome to the forum! i do hope you find the answers you need from your doctors. it is frustrating to not know what is going on with your body, i can relate to that feeling; even though i've had this for awhile, i still learn something new about it most days. POTS is not fatal, though it certainly changes your quality of life, and even with the same dx, i think ppl can and do experience POTS & its symptoms differently, though there is often a lot in common. in my experience, most doctors i've encountered don't even know what dysautonomia or any of its forms is; as a patient with typical doctors i've found i've had to educate them. and some are none to pleased with my knowing a bit more about my body than they do. in contrast, my GP and Dr Grubb's office have been outstanding. i am fortunate. you can read near-infinite frustrating encounters on this forum with physicians and medical folks who are not. i wish it was less common for all of us here. and i wish you understanding, competent medical care. i'm sorry i can't answer your other questions with any degree of certainty. there are others here who are very well informed about such things, i will leave it to them. i do hope you don't have POTS. i wouldn't wish this on anyone. good luck to you!

happy birthday, corina, and best wishes for a healthy happy year!!

LOL! ROFL!! HA HAA HAHAHA HAHHAHA! that is great humor, simply demented!! i'd PAY to see your infomercial on TV, just b/c it's such an original idea of how to handle the POTS dilemma when related to other ppl. brilliant! i'm a firm believer in having to have a keen sense of humor with this dysautonomia stuff...otherwise you just go crazy. (it is true that in my case, i'd probably have to hold up a sign so ppl would know the difference.... & i find humor in the weirdest things, b/c otherwise, i'd just cry about them or kill someone. <shakes head> well written and truly funny approach to this stuff. thanks for providing an ironic, witty laugh.

OUCH!!! i hope you are not having a stone...they are no fun!! (i've had 15, no joke!) do try drink plenty of liquids and try to move about if you can (it's agony, but it helps, really!) and if the pain gets bad, by all means go to doc and get meds/testing....the pain is enough to knock you out, plus you can sometimes get infections and have other related issues with kidney stones, which have at least always made my POTS/NCS worse. oh, i hope you are not having one---i wouldn't wish it on my worst enemy! (ok, well, maybe this one.... just kidding) keep us posted on your progress...i hope you feel better soon!!! (HUGS) lulu

very belated but very happy birthday thoughts are wished to you! hope you and family are feeling better and looking forward to many happy, healthy years together!! best wishes for a wonderful year, katherine! lulu

chiming in late, here...only thing i can add here is more of the same! you are not alone!! & i am so sorry you too are being given the run-around!! what a hassle! why can't we just get caring, needed help? .....seems so often there's too little of that to go around these days ?? (shakes head) i agree, don't subject yourself to more torture table test (that's what i call those darn TTT's) and please know i wish you all the best as you continue your journey!!! and i hope you feel better and get some answers soon! best, lulu

good question!!! i think, who knows how our brains work (or "don't" ) ??? crazy things! i definitely have passed out, repeatedly, even when already down! & i have dreams that i can't move...wake feeling like that "just returned to Earth" feeling after faint/near faint. actually most of my faints are "near-faints" technically....but it's excruciating, i think i'd rather just be completely unconscious!! i can't move but i'm still just barely conscious enough to know what's going on around me, my BP and HR will be *extraordinarily* low, but i remember things that were happening. i've had some docs say it is impossible for me to be concsious at such low levels, but then they say ppl in comas and with altered levels of consciousness are able to hear, just can't respond, right? so who knows? i often wonder if that is what it is like when i'm dreaming i can't move....or when i'm awake and can't respond. the strange human brain. and in we dysautonomics, seems like ours can be especially strange. i think we just don't know enough yet. someday??? 5903 AD? maybe? would be nice in our lifetimes, huh? as far as those doubting docs go, i haven't met one yet who knew EVERYTHING (just thought so! ) so just remember Anything is possible! (including treatment breakthroughs, good days...all those sometime seemingly far-off good things, too ) good luck Lulu

i get the "shake awakes" too! awful stuff. i also get palpitations when lying down, generally i'm more aware of them when *trying* to fall asleep. for the palps, my labetalol was increased at nighttime and for the shakes, if breathing slowly doesn't help i use my PRN ativan (about 1/2 mg). i've had pretty good relief from these. good luck!! lulu

sorry don't have any helpful answers for you, just watned to say "hang in there" and i certainly hope you feel better soon!! i have had docs not call back...it's such a lonely, frustrating feeling... well, you know you are not alone on this forum, if it's any comfort. i hope you get answers and relief soon. sending good healing vibes your way!! take care, lulu

so sorry nina you are having so many troubles!! OUCCHY!! these docs....what are they thinking....that you like this?? if you do get to see your doc, maybe tell her about the "bulldog?" i've reported a horrible nurse &my doc was very concerned and i think he did something about it (she's not there anymore!) i hope you feel better very soon!! (HUGS) lulu

exact ditto for me of what dionna said, usual low grade, so sometimes "brilliant" ER docs don't think i'm sick!! i wanted to say i'm so sorry about your dog. that is so tough! my heart goes out to you! (HUG) hope you get some answers! take care lulu

welcome to the forum! i hope you find what you need. i agree w/dionna....i didn't get a "formal" test for hyperadrenegic POTS, but i've had the TTT done a couple of times. iron maiden torture test, if you ask me. but it did help me to *know* what it was & be able to explain somewhat what was going on. but it didn't make the getting through living with it any easier.... for that i have good docs, supportive friends/family and this forum to thank!! you've come to the right place for support and good info! good luck! lulu

glad you're back in (mostly) one piece sorry about your experience with flying...i'm glad some people were nice to you and helped to look out for you. and the flight attendent who thought he was like the God of Water of whatever needs to get over himself.....i mean, what's he got to lose? will the airlines really take a huge loss with providing water to their patrons? (whether it's drunk on board or not?) hope you feel better!! lulu ps i'm also glad to know about the water situation on flights.....i have to fly to portland in a month or so. thanks for letting us know!

hope you feel better soon, martha!! i was injured my first weekend of vacation(concussion-still bothersome), it was a bummer! i hope you heal quickly and still get to enjoy your vacation

((((((HUGS))))))) for quick healing and to let you know you're being sent good thoughts for feeling better and a speedy recovery!! love and brightest blessings, Lulu

i buy gatorade powder (it comes in this great big canister) and then i make up a diluted version of gatorade to drink. it helps me to retain some fluids (i have a weird-staying-hydrated-thing) but decreases the caloric content and salt content>> i have to watch the salt b/c i have the hyperadrenergic form of pots (w/very high blood pressures if not on meds) and i'm trying to lose weight to lessen load on CV system. this seems to work fairly well for me, although i still end up at the hosp for IV fluids from time to time. if i only drink water, i somehow end up dehydrated even more. so i mix it up a bit. i've also heard of folks who don't like the "taste" of water putting lime or lemon juice and a pinch of salt in it. i can never use up the fresh fruit in time....EVER....a mystery for the ages.... i used to be able to find powerade powder, which i liked even better, b/c it had B vitamins in it. for some reason the local stores here have stopped carrying it. (because i bought too much??? )