Lulu

i posted a CONGRATS on another thread, but your achievement deserves 2 posts!! way to go, Dr. Persephone! and what a fascinating topic, too. I can't wait to read your first book! WOO HOO!! WAY TO GO! peace, lulu p.s. glad you have found treatments that are helping...i hope you continue to feel even more healthy & strong

don't have much to add, just that the other posters have good ideas and that i hope you feel better soon! vertigo is a horrible sensation! good luck and keep us posted!

sorry about your crappy day yesterday!! i hope things are going well at the Doc's today!! isn't it wonderful how some animals (not all mine do, thank goodness, there's not room for 6 cats, a ferret and 70 # dog in my bathroom ) just KNOW when you need them for a bit of encouragement?? hope all's well today! keep us posted! peace, lulu

CONGRATS on your scholarship!!! glad you survived your ordeal and are back! i hope you continue feeling better and better and i'm sure you'll do wonderfully at your PhD!!! Best, Lulu

i don't have much to add to this except i think you've received excellent advice here and that i wish you a safe and worthwhile flight!! good luck!! sounds like you might need a bit with the craziness in the world today (don't get me started) best wishes, lulu

sorry your testing answers weren't what you hoped. but you do have some answers....you just need to find what the questions are! just trying to cheer you up. i do hope you find more answers soon. my primary POTS sxs were tachy when standing, orthostatic intolerance and crushing fatigue, before treatment. i also have NCS, so i have fainting, dizziness and lightheadedness, it too was worse before treatment, but both are kind of Ok now. not completely controlled, but get-alongable. (join me as i start a revolution of making up new words!! ) seriously, it's a lot better w/treatment, but that's cuz i finally got a solid dx. it took YEARS. maybe you have a combo of different dysautonomias?? have you ever had a TTT done? i'm curious about who did your testing, too. i does sound like there is some weird stuff going on there with your heart....so if you don't have POTS, maybe they can find out what it really is? i wish you all the best in your continued quest and journey. (hugs) peace, lulu

so glad things went well for you!!! i seem to remember in my anatomy classes that different parts of the mouth have more nerves than others....so maybe it was that part. (ooooh, ain't i scientific? i'm sorry i can't remember more specifically) but i'm so glad things went well for you! will you have more appts now? peace, lulul

i will certainly agree with that!!! insomnia is like torture! i can't think of anything but sleeping, but can't sleep. i hope the Sandman comes for us all! lulu

i hope you feel better!! i'm now even more thankful i don't get migraines (knock on wood) you poor thing! that sounds awful!! i hope you are able to get some relief! (hugs) peace, lulu

i get a drop in HR initially, then it goes up, up and up! then after my body's had enough of that, it says, "Ok, everybody, Get Dizzy Now" and i go presyncopal or just go right down. The without warning ones are happening more frequently....yikes but this BP rise w/syncope or presyncope does't happen everytime i stand. it used to, (for years>>it was incapacitating! ) but i think as a result of med combos/lifestyle changes/re-conditioning, it's gotten much, much better of the years. as a matter of fact, i amazed myself: i stood for hours in the OR (it's nice and cool ) [this would be for nursing school clinical observations, in case you were wondering ] or i can stand for some time in warm places, for short periods. but i can't stand for anytime in the heat. i start feeling dizzy and pass right out...like cooking in the kitchen. i have to have a chair to sit on &/or fan running. outside in summer? fuhgeddabowdit!! although i'm gonna try that mister/fan thing i read (i think Mighty Mouse posted?) about when i can afford it. and how's this for irony: i'm on so much cardiac meds now, that tachy for me doesn't ever really go too much above 100 bpm anymore. which is GREAT, but i still feel palps/tachy, even if my rate is only upper 80's? it's in "normal" range, but i've got all the ooky yucky symptoms!! and the doc's are so blase about it, like, "um yeah, and your problem is what, specifically?" they can't do anything about it, really, and my argument that my usual heart rate is mid to upper 50's is unconvincing. so i just try to avoid getting real tachy & deal with it (suffer thru it) when it happens (ativan helps, along with cool showers and deep breathing/relaxation) and continue better living through cardiac chemistry, i guess. LOL i'm not complaining. i'm better controlled than i've ever been, it's just frustrating to still have all the symptoms, but my vitals aren't setting off any alarms for anyone but me! hey, where's that party?? we need to get in a good supply of MAGIC PILLS there so we can all feel better!! hey as long as we're having a virtual party, it doesn't hurt to dream...... love and light, y'all, lulu

so would that make me "Lu Diamond Phlilps Screwy Driver"? it does have that certain, what the french call, "i don't know what." definitely at the top of the running, and it beat out "health ninja" in a recent poll (of myself) by 2 to 1. i obviously need some sleep!! ack! (and hey thanks for the nice compliment. you make me smile too )

hey rebecca-- i sure know how your feeling about being angry about insominia and our body's responses to things!! geesh, it's frustrating!!! i so appreciate knowing i'm not alone....so your post means a great deal to me even if you don't have "advice." i agreee w/you COMPLETELY about the docs & i'm sorry you're not getting better help! have you tried herbal stuff? and your response to BB's that's weird, they're supposed to make you tired! but then i guess it's kinda typical for all of us here to have atypical reactions to meds! like you said, why is it we have to have all this weird stuff in reaction to what "normal" people can get through. it certainly makes me feel like an alien, but i'm glad i'm not the only one! it's ok and NORMAL for you to be feeling a bit down on occasion about having this illness. i hope it's just a blustery day that blows over for you... it certainly IS a journey, with many ups and downs. i hope you get some sleep too and feel better. it's so hard to accept POTS, isn't it? i feel like i have sometimes, and then TA DAH! it rears its ugly head again and i feel like i've taken 2 steps back to my one ahead. hang in there, bec!! and please know that i'm here for you and so are others. you are not alone, either! and hey, we all need a good rant about POTS everynow and again! it helps keep us (a bit more) sane! i've said it before, you don't have to be crazy to have POTS, but it helps!! lol hope the sandman comes for all us insomniacs! love & light, lulu

well, i've made it through the exam! it was harder than i thought it would be! i hope i passed my class! thanks for your support and ideas, you guys are awesome! dionna, no doubt i need to find a more effective "leader" in my imaginings to get me back on track!! the thought of squirming through marine boot camp or just thining about the job they do makes my head spin....maybe you're really onto something there!!! i'll think of them instead of army. LOL! & knowing you were "there" with me gave me such comfort. thank you for that. hiya, daniel --um, yes i sure have heard of sleep hygiene...i was mental health counselor for 10 years and almost (i hope!) a senior in nursing school. don'tcha think it's the weirdest phrase you've ever heard? like you should "clean" your sleep or something weird like that? but yeah, i'm well-versed in it and do different versions each night depending on how the day has been for me. for POTsers i don't think it's really applicable to do the same thing each night--like you need different strategies-- because we can change so much from day to day. (maybe varying your version would work for you?? possibly?? They do say that insanity is doing the same thing over and over and expecting different results ) but i went through my whole routine last night, just like i do everynight. ended up taking more meds than i wanted, then this AM had to have pepsi to perk up. i hate doing that. i think it's just going to take a few days for my body to recover from recent exacerbation. i need to be patient and just let it happen. i hope you are able to get some sleep too, daniel! & yeah, those warm showers are always taken with caution...and NEVER when i'm alone in the house. tanzy, thanks for the (hug) & you gave me a terrific idea! i am *definitely* going to try relaxation cd's...that is one i haven't done yet! any recommendations? specifically, what worked for you? or what would you look for if you were going to buy one? thanks guys, all of you...i soooooo appreciate your support and ideas!!! :) you all mean a lot to me, thanks (hugs) i'm spending the day with my brother, listening to classical music and adventuring in the countryside. should be just what i need to get the last of the school worrying outta my system! i think it will help a lot if i don't nap excessively today....(fingers crossed!) will let you know if i'm really "officially" a senior later....i "think" i am but the test i took today determines that for sure according to the school. peace & light, lulu

hey y'all fellow board folks-- i've been having a LOT of trouble sleeping the past 4 days or so, i'll doze for an hour or two, have weird boo-freaky dreams and then PING! awake again! i think i've got 3-5 hrs total/day, but all broke-up like and i'm in a total POTS-hole when not surging. i feel like a yoyo! tonight is the worst. i've been trying *everything* i can think of to go to sleep, trick myself to sleep.....nothing is working. i'm ready to cry!! i think i'm going crazy! i tried my chill out stuff beginning at 10>> it's almost 5! yikes! so tonight i've had all sorts of aches and pains the allover kind i can't get a handle on in summer, cuz it's too hot to take a warm bath and use electric blankie! and i'm *freaking* out cuz i have a final in (gulp!) in less than 6 hours!! i *know* i'm making it worse with worry, i can't stop though. sigh. tried deep breathing, aromatherapy, a warmish shower....i dunno if i'm nervous or what or if i started surging and now can't stop! i've even tried my PRN meds and vicodin for the pain (it's gotten that bad!) and nothing is working. and i can't make my legs stop jiggling. does anyone know what that is about?? never had that before! this keeps happening to me off and on again, but it happened last final and then when i got to it i was falling asleep while taking the test!!...um, not really a good thing. despite this history, i'm trying to stay positive. i'm going to try and RELAX! i've got to chill...feels like there's a drill sergeant in my head screaming at me to "RELAX!" ack! the cheese is slipping off the cracker, y'all. i feel so nutty. this does not bode well for test taking. wish me luck? ideas for next time? [anyone ever see that tshirt, "can't sleep. clowns will eat me." ??? that's what i keep thinking my life is like, over and over again...hence the title ]

i'm not quite 40 yet, but i'm beginning early menopause, hooray (not at 35, ugh) it is wreaking havoc on my body. i would also love to hear if anyone has any ideas that have helped....my doc wants to do a partial hysterectomy! i've heard dr. grubb say before that dysautonomia gets worse w/ menopause and i'm kinda terrified!

good luck with all those pesky lines, melissa! we are all pulling for you! you continue to be in my thoughts, wishing you health and no owies and perfectly mannered, awesome docs and staff and to get home quick!!! peace, lulu

wow! joy-what a story! glad you'r mom finally came around!! how sad that it took so long! and just as you've said, i wanted to say to anna that you are a great mom. i meant to put it in my post, then bloop! it was up there and i forgot. (lack of sleep is making me crazy right now) my own family has finally come around to understanding this is a serious illness and that i wasn't faking being sick. your daughter is fortunate to have so caring and understanding a mother! good luck to your whole family!

wow!! sunfish is having to go thru so much! i hope she feels better soon and they get this all figured out!! i bet she's funny on morphine, even tho i've never met her, because i was a crazy on it! i really do recognize that i'm kinda "out there" anyways, but when i was on a morphine PCA i said the funkiest stuff and have NO recollection of it at all!! my brother said i said, "you know, like kate moss" and "that's why i like horseback riding" out of the CLEAR BLUE during a conversation. my husband tells me i watched an entire hour of spongebob squarepants and thought it was "genius" and "brilliant." it wasn't me, i swear!! it was that other-drug-affected lulu!!! oxycontin and some abx make me the same way. i am glad to hear that sunfish isn't in pain, but i hope she is back on her feet soon. thanks for the posts, Emily and Nina. you guys were cracking me up! and i know we're all glad to know more about fishy's condition.

i agree with the other posters about asking for medical advice on this and if you feel you can't breathe, definitely call 911!! i used to get this all the time, turns out it wasn't my heart at all! i had an endoscopy (where they look down your throat into your stomach) & i had REALLY super bad acid reflux and it was eating away at the cardiac sphincter (the closure at the top of your stomach, near the heart) and my esophagus!! ugh! it was so bad i had to take 2 protonix each day, even after it healed. & change my diet!! now i take nexium, twice a day (insurance issue--it's the same stuff, basically). i still have some troubles with it on occasion, but it's nowhere near as bad now. just wanted to mention it, in case it might be the source for you too?? but make sure you get your heart and lungs checked out first! good luck! i hope you feel better!! that pain is ouchy!! i remember it well! (i had NO other sxs of acid reflux, either, btw) take care, peace, lulu p.s. if you've had a recent cold or cough, you can sometimes crack a rib during coughing, i've done that too and it is definitely painful!! hope you feel better!

woooooooo, tanzanite!!! it's so sparkly and pretty!! hey--i've heard in some circles if you take a name that has healing properties (tanzanite is supposed to), it will make you well.... so with that theory we could have a massive name changing?? heck, that might work as well or better as some of the things "doctors" have told me!!! you'd be our trendsetter, leading us to a new age LOL !! you go, girl! [now i have to think of cool new name too>>> health ninja ? just kidding! woke from nap in silly mood, sorry ] i love your new name! everyone needs a change now and again & who knows, maybe there's something to that saying i heard?? yeah, watch out for that sudafed stuff!! nasty!! i hope you can find your "balance" and continue to do better and better! (hugs) back at 'cha take care, tanzy!! peace, lulu

an almost exact ditto of what calypso posted. i've always had this forgetting to breathe thing since i've had dysautonomia (looooong before the actual dx) i think it's probably related, weird and complicated, like seemingly most things are about ANS function. what helps me: relaxation and re-begninng yoga AND i have a special watch that (when i remember to wear) vibrates (instead of beeping) on the hour. those are the times i get something to drink and do some breathing exercises. doing this regularly during my waking hours helps me to be more aware of breathing and fluid intake and it really helps me to feel better! although you'd think i could remember to breathe and to quench my thirst w/o technological intervention i do know that decreased respirations can contribute to anxiety and make s/s of ANS dysfunction worse, so it can be like a vicious cycle. i hope you are able to find some relief. peace, lulu

could it be pseudoephedrine? it's the stimulant in "sudafed" type decongestants. i used to have the same reactions you are speaking of to stimulants....caffeine, nicotine (hey i quit 9 months ago!) the decongestant i just mentioned, and to activity. then i would find i felt like i did before i got this dysautonomia stuff. it was great! i would feel all kinda-hyper and buzzy and happy, like i could think better and i just felt better. i thought, "hooray, problem solved!!" HOWEVER (darn it, there's always a "however" with POTS ), my heart rate was actually escalating all these times, along with my BP (and i wouldn't even know it, because i felt "fine" just buzzy and wired and getting so much done) and then CRASH!!! i would pass out seemingly out of the blue. i have been told since that when my body reached a certain level of overstimulation of the sympathetic nervous system (your "fight or flight" stuff) that my body would basically go, "Oh no you don't even!" and then begin a shutdown before my BP went even more dangerously higher. i never realized how high my BP was actually getting until i started nursing school. i was drinking pepsi's and took sudafed for my allergies and smoked at that time so, i'm feeling OK, and we're learning to take BP's on each other....and mine was like 240/160ish or something, HR in the 120+ range. and my schoolmate looked at me like she had done it wrong and got our instructor (an M.D. for our H&P course) and he took it. still up in that range. and he was like, "do you need to go to the ER?" i told him i felt fine. (but it scared the crap outta me!) later that day i had yet another total crash out. this continued until it became apparent that i was really having more and more BP problems and more and more syncope problems. i eventually had to leave the school and took six months to recover, part of which was no more stimulants!! certainly not like i'd been using them. (i still eat chocolate, i'm a woman, after all. but just little bits....moderation and all that) my point is, and sorry this is soooooo long. (i need an editor!) is that it worked for awhile, but in the end it did me more damage than good, and i couldn't even tell, because i was feeling good. i also have the hyperadrenergic form of POTS and we can't take care of ourselves in the same way other POTSers do. dr. grubb told me that the medical community should have named hyperadrenergic POTS something else because the treatments for it are sometimes the exact opposite of what the other kinds of POTS are. i told him why don't you call it "anti-POTS" and he laughed, said that would be a better name than what we have. of course, if it is working for you, have at it, i say! we are all different. i just wanted to share what happened with me, it sounded similar to others' experiences and i hope what happened to me won't happen to you or anyone! yuck!! best wishes, cyberpixie, and peace, lulu p.s. i now find i have to limit my activity in the evening or i'll be to keyed up to go to bed, even with Klonopin and Ativan on board. then the insomnia makes me more hyper and so it goes....into another cycle.

hey, & i thought i was the only weirdo allergic to the hospital soap! isn't it fun? NOT! whenever i've had an allergic reaction, i've been able to get relief from benadryl....and hopefully i get it in time so that i don't have a full-body reaction to the allergen! i'm terribly allergic to peanuts and have to be super duper careful not to get any hints of it.....don't know what that 15 year old epi pen would do to me now! (i would guess if i went into anaphylaxis, i'd need the epi to breathe, and then they'd worry about the tachy later? i guess i should look into this... wonder how i forgot about that? wait, i know, it's me, in perpetual POTs brain fog, duh) anyhoo, linda, yeah, when i had my really bad allergic reactions to peanuts i would that all swelled up feeling. thankfully in more recent (POTS) years, i've been able to catch the itchies before it gets to that point and of course i avoid any foods that have even a hint of peanuts in them. do you think it could be a latex allergy to the tubing or adhesive tapes from your IV therapy? if you're sure it's the linens, make sure you bring your own...i know it's a pain in the patootie (i'd have to do it too, but generally i am only getting the litre for about 20 minutes...i can usually handle it "wide open" and so i'm not there too long...but i know for many POTsers they have to infuse s-l-o-w-l-y) but anyways the more you're exposed to the allergen the worse your reactions will get! yikes! sorry you're going through all this crud!! hang in there!

another vote for POTS! i've had unexplained acheyness in shoulders/neck especially, but all over, too. sometimes it keeps me awake. no one has ever been able to explain why. the oxygen theory seems as good as any i've heard that stretching and yoga can be good for this, and, ahem, exercise....[i wish thinking about being able to exercise counted! ] but i'm able to do a wee bit of yoga & stretching, but not daily....sometimes it makes me pass out just to stretch really good! [so much for "warming up" for exercise even! LOL] one thing that has helped when i can't stand the aches anymore it is a hot bath...but certainly not in this weather!! and NEVER w/o my hubby being home. maybe NSAIDS would work better for you (motrin or aleve?) than tylenol (if you can take them?) hope you get some relief....along with the rest of us...glad to hear your meds are working peace, lulu

welcome! i always write too much, & i don't think you did at all (i need an editor!) so sorry you're having flareups--but that's usually all they are, bumps in the road that are frustrating and then you can resume your normal level of functioning. i find my anxiety often contributes to my POTS and NCS and ativan is helpful. what are your flareups like? what do you usually do to make them easier? on occasion, i'm able to learn from my flareups and prevent the next ones that are like it. i wish i could learn more and get sick less, but hey? that's dysautonomia for ya. i do hope you feel better soon and welcome again peace, lulu