Lulu

wishing you continued strength and healing to both of you!!

hi dionna i am not sure if this will be helpful...i am fairly well-controlled on my meds/diet now, so i don't faint as much>> i used to faint nearly constantly & i couldn't do anything much at all! after a long while, i found a med/diet/lifestyle combo that worked better. it's been gradual over a period of years for me to be as high-functioning as i am now, a series of baby steps forward & back. during this rollercoaster, i got sick, quit grad school, got a bit better, got my M.A., got sick again, worked, got sick again, then career change (back to school), got sick, worked, now i've stopped work & "just" do school & still get sick. school's a bit easier than work to juggle while i'm getting "re-conditioned" physically (or at least trying!), i think. it's still hard, tho! maybe school is an option for you? learn something new? maybe you could even get it paid for? i read you are trying some new things out? so maybe with some time, you will even out? hopefully!! people do make great progress, despite this illness & others! although i do still faint, i can "tell" beforehand....i'm guessing you don't have that "luxury"? i can still drive. currently, i'm in nursing school part time, which is not a "real" job, but it takes time & energy, & has its risks. i've been able to work w/ school when i've gotten sick, b/c there *are* days i can't make it thru. this forum has also provided terrific support my doctors have continued to clear me for clinicals (tough days...7+ hrs, sometimes w/o break..very challenging). so far i have had great luck (or my dedication to getting more healthy is actually paying off?) & now i'm officially a senior. it's a trade-off, tho: i have to focus a TON of my energy on school, & so other things like cleaning, gardening or staying in touch with friends have had to get less (or none in the case of housecleaning ) of my energy. my husband has stuck by me; he's awesome the BIG test will be to see if i can stay well to actually become a nurse & work, even if part time? i'm terrified to get *really* sick again & not finish school. one solace is that nursing has many options, so if i get thru school, maybe i can find a niche outside the norm? maybe? it's scary!! i'm certainly not someone to advise how to "work" with dysautonomia, i can only really encourage you to Hang In There, Do Your Thing, Take Good Care & see what you are able to do!! you could be amazed at what is around the corner! you could feel better or find an understanding boss hold on to hope! or maybe we could all form a union of "professional patients"? LOL i don't think the pay is very good, but i'm sure we'd all be brilliant at it! dionna, i sincerely wish you the best of luck and thank you for your service as a veteran!your situation certainly does present some tough concerns...best wishes for everything!!

that is great you are feeling better! THANK YOU for sharing your positive experience! it's so easy to lose sight of the good times sometimes with any kind of dysautonomia, huh? this is a good place to share concerns and our triumphs, even if the latter is seemingly rare. i am always so thrilled to hear when anyone of us is doing really well, on whatever level that may be!! and i would certainly caution you not to overdo it, just like others have, too. i'm sure we're not trying to rain on your parade (i guess i should only speak for myself, but the ppl here are so supportive overall) just be careful!! best wishes for continued feeling better!! to all of us!!

Feel better quick, melissa! i hope all goes well and join everyone here in sending you healing, good thoughts!

i also put off going to the dentist for YEARS! i certainly new better, but my childhood dentist was the *best* and he had a stroke. it was so horrible, he wasn't all that old when it happened as a result of a motorcycle accident. so he could no longer practice, and all his patients had to try to find someone even half as good as he was. it seemed impossible, like every dentist i tried after him was either a jerk, or scared me or didn't get the dysautonomia thing when it became an issue for me. i just gave up. not smart! but i was scared!! then i had to have an extraction recently... i was petrified not only of meds, but of pain [which has a tendency to set off adrenalin storms in me], and of the new dentist! plus i was embarrassed for being such a wimp and that they would see how bad my mouth was from neglecting to go to the dentist like a normal person. i went to my husband's dentist & i explained to him i couldn't have any meds that affected cardiac and i had a tendency to faint with pain or high anxiety. he said "we can handle that, it's not a problem. there are lots of medicines we can use." he didn't tell me what he used (he's rather a really quiet guy, actually) but he put this numbing stuff on and then gave me the shots (i'm guessing it was the non-epi stuff cuz i didn't go into ultra-POTS rampage mode ) and i had *no* problems whatsoever.NONE! i thought it was really going to hurt, but it didn't at all! hooray! the stress i put myself through before going, just being so scared and upset, was WAY worse than actually being there. i wish you luck!

i have heard this before...it is true! in school they taught us that "salt follows water" so you can get an electrolyte imbalance if you drink too much water. ...but i just wanted to mention for those that have the hyperadrenergic form of POTS that it's important to be careful of getting too much salt (according to dr. grubb) because it can raise your blood pressure even more...... but, even with that said, i would venture to guess that everyone is different; i have been battling this fluid imbalance for some time now. i've consistently drunk lots and lots of water, just as dr. grubb recommended, and have still run into BIG problems w/ POTS symptoms and NCS symptoms. i've tried combinations of water and gatorade, varieties of beverages, stopped caffeine...the dehydration/fluid imbalance issue seems it will remain a mystery for me. no one can explain why my body behaves this way. i was tested for diabetes, diabetes insipidus and other fluid/electrolyte imbalance stuff and everything was normal. but every once in awhile i still have to go get IV saline, whether i'm drinking 4 litres or 2, straight water or gatorade or combo. this winter i went every 48 hours for IV therapy and this summer, when you would think i'd have dehydration issues, i haven't needed it yet! definitely strange. i've just chalked it up to some as-yet-unknown dysautonomia related issue. or perhaps i actually AM an alien? LOL anyone else deal with such craziness?

hi daniel, welcome to the forum! i'm sorry to hear of your troubles. at one point in my life, i was prescribed lithium (i was misdiagnosed as bipolar) and it is a vasodilator, so it made my POTS worse. but i've not heard of a medication setting off POTS, specifically, but there are lots that make it really bad for some people. as for the geodon, i don't know much about that med specifically, but i know when i have a had a med that i don't do well on, it takes me a longer time to recover than "normal" people. so maybe over a month off of geodon is not long enough? did you have any symptoms before you were taking it? are you on other medications that could be affecting you or stopped taking some med that could be affecting you? also the loss of sleep can really make you feel bad, i know that feeling. yuck! i am sorry i don't have any other good advice for your situation than what people have already posted. i hope that you are able to find some answers and feel better. good luck!

it could also maybe be SIADH, where you basically pee too much. i agree, a 24 hr urine collection, a test for diabetes and a urinalysis would be good ideas. and it is a really good idea to use those soft cloths so you aren't raw and then susceptible to some kind of skin infection, plus not to mention the hurting. the "normal" output for a person is about 30 ml per hour (about 2 Tbsp) but we PoTser's usually drink way more, so we pee way more and it balances out. but what your describing sounds like a doctor checkup should be involved. good luck! peace, lulu

happy belated! glad you were able to enjoy your special day! like most of the others, i've got serious thermoregulation problems and they are WEIRD. sometimes, esp. after i eat, it's like my torso has all the blood and heat and everything else is cold and icky feeling. in the summer, even with a/c i have to take cooling showers and then the opposite in winter. i think it has something to do with vasoconstriction and dilation in people with dysautonomia not working as fast as "normal" ppl, but i'm not sure. i've also noticed if i am cold for too long or hot for too long, i'll pay for it with syncopal episodes, foggy thinking, tachy's or palps within 48 hours. so i try to watch the temp of my environs. also i try to eat small meals and avoid sugar, alcohol and caffeine which really seem to trigger some bad responses in me. maybe blood was going to your torso from the meal, and it was your back because you were sitting up against the back of a chair or booth?? i don't know...just wondering. hope you are able to get a handle on it. good luck and best wishes for a wonderful year. peace, lulu

like others, i had time off when first dx'd. then i went back full-time and was going to school and of course was totally overdoing and got really sick again, so then had more time off. then went back to part time work and part time school, became a wreck again, now just part time school (but it's nursing school, so it's like full time with all day clinicals and labs and stuff) and just getting things back under control again with my body. i still have good and bad days, some seemingly without warning, although i'm nowhere near as out-of-control as i was when first dx'd. i'm working on getting re-conditioned and getting stronger, eventually want to go back to work full time. hopefully, the upward trajectory of my getting healthier and in better shape will meet the downward trajectory this illness seems to be presenting in me somewhere high enough on the functioning scale to work again. i wish you all the best. it can be done, but remember your health is most important! :-) good luck, peace, lulu

hey dizzy- long time no write, on my part. i am *so sorry* you are going thru this!! (i'm also going thru similar reproductive issues and it's driving me nuts!) i have had the same prob--no sleep and then these periods of time where i couldn't stay awake if i was at gunpoint!! my vision doubles, i feel all funky, like my body is being sucked down by a huge super magnet. like extreme pots! (there's a title for a new reality show lol). when i've had these episodes in the past, they have eventually gone away....but yours is going on a little too long, huh? 2 questions: are you still on IV therapy? & have you had your electrolytes tested? it could be a calcium/magnesim thing or a potassium thing. (too much or too little of any of 'em can give ya trouble). i *really* hope you feel better soon. maybe you are a sleep camel and just storing up for the next round of insomnia? just kidding....that's just how i always felt....feast or famine, ya know? keep us posted. good luck! PM if ya want about the girlie stuff, we can compare notes. peace, lulu

i agree wholeheartedly with other posters. you should talk to your doc. one of the side effects of beta blockers is orthostatic hypotension with the first few doses and nausea goes along with atenolol. whatever you are on, it will take awhile for your body to adjust...and it's been used to working with a flawed system..so now that you are fixing it, your body is going through some changes and gonna try to give you some static. what else is new for us, huh? try to move slowly and breathe deeply and slowly before you get up or move around. sometimes peppermints or ginger help with nausea, or taking the med with food if it bothers your stomach really bad. hope you feel better! peace, lulu

i've had this problem continuously. it seems more worse (? um, yeah great grammar) some days and better others and i have NO IDEA why. doc upped my labetalol at night by a little bit and sometimes i up my klonopin &/or ativan just a wee bit on the *really bad* nights. that has really helped. i've also tried aromatherapy and meditation, which helps the panic, cause i feel like i'm going crazy when i wake up all tachy and shaky or am trying to fall asleep and it feels like my heart is palpitating out of my freakin body. not a good feeling. i sympathize. there's a lot of good ideas posted. definitely something to follow up with your doc about. good luck! peace, lulu

i've had about 15 (known) kidney stones since my twenties, when i started having what i learned in my late twenties to be dysautonomia stuff. i would guess they could be related....i've had dehydration issues, too, VERY atypcial, & no one yet can explain why each year some system in my body craps out on me. believe it or not, the closest was an ER doc (note: NOT a specialist), who asked me what i had....i said "dysautonomia" and he asked what that was, basically. i said "a dysfunction of the autonomic nervous system, basically" and he then asked "& what does that control in your body?" and i answered, "well, almost everything, huh?" he just smiled, said "that's right. why are you suprised when we have no explanation for why all kinds of things are happening to you?" wow!! that was an eye-opener! (but also frustrating and sad, in a way). he also admitted medicine had a lot of catching up to do for those of us with this disorder. i had to laugh. he was the first doc who *didn't know anything* but really seemed to have put his finger on a HUGE truth. and one of the only ER docs i've had any respect for...it's usually a battle i won't even go to fight. sorry for your stones. they hurt, huh? take care and feel better. LOTS of fluids, no dark sodas, tea or coffee and reduced calcium has brought the stone count from 1-2/yr to 1 maybe every 2 years, if that. good luck! :-) lulu

hi sonotech, i remember when you first came to the board and we had a few discussions. that was cool i've had some stuff go on in my life where i just had to drop the board and take care of me and my "real" life for awhile. I hope you can understand maybe sometimes these folks that are your friends, new or old, have other things they need to deal with and they are not *purposefully* ignoring you, it just happens to come off that way. I am truly sorry if my recent absence has caused you to doubt your "friend-worthy" status!! you are super-awesome-cool!! you are so kind and insightful and humorous.....people just have to get to know you and sometimes it is THEM who have the problems of not being able to do that. just remember you are a great person, even with the challenge of dysautonomia, which is super hard for others to understand. I have this same problem....there are like 2-3 pepople in my ENTIRE nursing class that I can talk to about what is going on with me and my teachers keep trying to kick me out. I don't have the energy to keep up *** my local friends, my faraway friends and all my DINET friends too. I have been doing the best I can whihc has been lacking. I am hoping I can participate in the forum a bit more with a nice school break coming up and now that I am feeling a little bit bettter. Hang in there, it takes time! But you can PM me whenever you like. Peace, Lulu

I have tried SSRI's (prozac, zoloft, and the latest, cymbalta). I don't think I posted about my experience with them before. Just wanted to add that I had a *horrible* time on them. Seemed to trigger adrenalin surges in me that just could not be stopped without chemical intervention. Cymbalta was the worst for me. I think I was hallucinating, I felt a terrific adrenalin storm and super funky weird. But to each, his/her own. Their half-life is not terribly terribly long, so you can always stop taking them and begin the recovery from them if need be. Good luck! and welcome to the board! :-) Lulu

I have a RX for IV fluids at the hosp. PRN, my PCP agreed to this readily-- he is not a dysautonomia specialist, but said it made "intuitive" sense to him that dysautonomia would affect my body in weird ways that medical science hadn't figured out yet the why's & how's to. (Others, docs, RNS have told me pretty much the same thing when I ask them) (Still no word from Dr. G.) My PCP didn't have a problem with 1 litre/24 hr. There's not too much bad that a litre, when needed, can do to you. But, yep, it's true, too much too quick can make congestive heart failure worse; back up in your lungs & make it hard/hurt to breathe (I've had it happen, too, Ernie); plus it can wash out electrolytes & watersoluble vitamins. But those of us who need fluids know when we need them, at least I can always tell...I start feeling really really POTSy. Like others here, I just really don't get this. I am supposed to/do drink at least a gallon/day (most days), & it's not going into the tissues instead of my bloodstream, my kidneys are fine & my lab values are good enough that my insurance won't pay for procit. But then i've seen where it's not recommended for H-type POTS. Why do I have sxs of dehydration/hypovolemia with my H-type POTS, it's not typical? So what's the dilly? I'm still totally confused on this. Maybe there won't be answers in my lifetime? This unproven 'intuitive" theory makes about as much sense to me as anything else. It makes me crazy what we don't know. I do want to get a port, though, if this IV fluid need keeps up. I go about every 2 days & my veins are getting bruised & hurt. It looks like track marks. But I am so glad that I have a scrip for fluids now when I need them. & I am really glad others here do, too! It makes such a difference, doesn't it?

I'm thinking about a HUGE, butt-kicking millipede, that's still kinda smiley, with a whole bunch of shoes......it just seems another shoe drops when I least expect it! Oh, do I need to go to bed and get over this cold or whatever it is.

ACK! am I doomed, or what? School starts the day after tomorrow! Back to bed with me....more garlic, fluids, zinc, tea, juice, warm blankies. And today I'm ravenous! But my mouth tastes all briny--anyone have that, ever? Ah, POTS....just when you think you're feeling better.....WHAM! The other shoe drops. (Although I think POTS is a millipede, a HUGE many-shoed millipede that will kick your butt!....have to add that idea to the mascot post.) What an image. Off to bed before I demonstrate just exactly how loopy-Lulu I can get. Stay well, the rest of you. Love and light, Lulu

I can SO relate to this, Pixie! (and everyone else ) Thank you for this thread. I have to have a good five hours, AND then up a couple and then back to couch or bed for a couple-three-four more. I can't seem to prevent waking in the middle of the night, (someone tell me what is UP with that?) so I just get up and do something so I'm not just sighing, driving myself (more) bonkers and thrashing in bed trying to get back to sleep. Within 2-3 hours, like clockwork, I have to go back to bed. If any of these elements are lost in my daily routine>>I feel completely zombified and will eventually receive the Great Command from the body, independent of geography or activity. ("You are going to lie down, NOW, whether you like it or not," The Great Command says.) Best not to receive the Great Command, it usually means I'm gonna end up on the floor semi-conscious with a bruised noggin or body part(s), maybe with people around freaking out cuz I just fainted or by myself with no help to get up. My body will literally s-h-u-t m-e d-o-w-n. Nothing like getting body-checked from consciousness. I hate the syncopal & near-syncopal episodes and having no choice about heeding the Great Command, which often stretches out into a string of bad days when I can't get enough sleep. Not only can I not stay asleep as long as I want, I can't fall asleep when I want, even with very good medication, meditation, good "sleep hygiene" (yep, that's what it's called! can you believe it?). (Yes, docs and nurses and friends and books and probably even Sesame Street say don't take too many naps..you won't fall asleep.... but for me, naps are absolutely required....see above reference to Great Command...what can you do?) But anyway, I can fake myself out sometimes, too, just like you do, Pixie, when it's way late....I leave the light on and "read." I start floating off (feeling paralyzed and like I'm hallucinating).....and I just tell myself, (ahem, that is tell myself a little white lie....) "Oh, no, I'm not trying to sleep now. I'm just gonna think about the storyline while I close my eyes." I can sometimes get 5 hours sleep this way, but it feels like I'm still kind of awake. It is definitely bizarre. Probably no more bizarre than having conversations with yourself about your illness. (As I've said: You don't have to be crazy to have POTS, but it sure helps! ) I find use of my Ativan Rx helps keep me from getting so anxious over breaks in routine that might lead to several horrible days that I end up with the self-fulfiling prophecy of having several horrible days because I got worried about it. It's so easy to get stressed out about this illness---you never know what's going to happen! I am glad I'm not *entirely* alone in this. Though I hope you all aren't completely bonkers yet and I wish none of us had to go through horrible sleep disturbances. Well, it's back to bed for me. I've been up 2 hours already, slaving away on the Internet--what am I thinking? Nighty-night, love and light, Lulu

wow, I'm glad I'm not alone, too! I was asked to describe this (What is POTSy?) and I said it's like feeling the core of your being being sucked to China and the whole of your body floating to outer space (like Major Tom in the David Bowie song) and I can feel it all happening, see it happening and can't do a dang thing about it. I feel semi-paralyzed when this is happening. It scared the beejeepers outta me the first hundred times it happened. Now, it happens w/ every syncopal or near-syncopal incident. I just kind of let go and don't fight it, remembering I always come back, as hard as that is. I second Lauren's advice, don't let it freak you out too much. (Easier said than done, I know) Your spaceship knows which way to go. Hang in there, Susan! (and all of us floaters!) (((((HUGS)))))) Peace and courage, Lulu (from Space Oddity by David Bowie) "This is Major Tom to Ground Control I'm stepping through the door And I'm floating in a most peculiar way And the stars look very different today For here Am I sitting in a tin can Far above the world Planet Earth is blue And there's nothing I can do Though I'm past one hundred thousand miles I'm feeling very still And I think my spaceship knows which way to go"

Welcome, Laura! I still think of myself as a newbie....I've only been here a month or so. I just dove in (it's a vulnerable feeling sometimes, to be sure) & everyone has been helpful and supportive. I've learned so much! So, if I may concur with the others who have been here much longer than I, "Welcome aboard" and "The more the merrier" Someone's signature has been "Strangers are friends who haven't met yet." I think that is so cool & kinda sums up what this forum is really about. I'm glad I found it and I'm glad you found us (Not glad that you have dysautonomia, but I hope I/we can be supportive and helpful to you.) Love and light, Lulu

[Preface: this is what happens with no sleep/too much sleep/my brain on POTS and a cold....] What do think the POTS mascot should be? A lion, for our bravery? A squirrel, 'cause it drives you nuts? A snake, 'cause it sneaks into your life? Or some weird hybrid? Could it be an oak tree--for our strength, or a willow tree--for having to be flexible? A grain/beach of sand for the seemingly never-ending saga of what this illness does to us? Or a slab of granite for our fortitude? What mascot(s) would most define your POTS experience and why? Love and light, The ever-questioning LL

Happy Birthday, Jan! No, you are not alone with med reactions and "kooky" body stuff. I have so many allergies, I need a wheelbarrow to carry the list it seems! (then I run into "brilliant" ER docs who ask me why I have so many allergies......ARGH! ) I agree, I have said to my family it won't be POTS that kills me (although, right now, POTS + cold/flu=pretty close) but some infection that will be antibiotic resistant, since I can only take about 2 types of antibiotics. Or it will be some other weird thing....I will faint and split my head open.....gosh, if I let it, the list of my fears about this could go in that wheelbarrow, too! It's scary to feel your body coming unglued, huh? Jan, I hope you will feel better and stay strong in your faith and hope. I am grateful for this forum, too. Even though no one here can cure me, it helps to know I'm not alone and to have some support. I have had it for 8+ years (probably longer) and shudder at all the times I have truly believed that that day would be the day I just LOST IT (sometimes it's an almost-daily occurrence!). I wonder if I'll ever really get better, too. I guess we just have to take one day at a time, or hour at a time, as cliche as it sounds. What else to do? I wish you a very merry birthday and a year of joy, continued courage and strength, with love and light, Lulu

Thank you all so much for sharing your feelings. This is tough stuff. I really appreciate the comments from the folks that may believe they are "cynical" or "bitter." This illness does horrible things to us and I, for one, do not judge what anyone has taken away from it--good, bad or indifferent. And I really appreciate the comments from folks who say they've found some positives, too. As I've stated before, I'm the curious philosophical sort, and just hope to hear how others are doing with this. I am grateful to all who have bravely posted their thoughts on this & hope to see more....I absolutely believe we are each entitled to be/feel/express wherever we are at. It seems like we all still hope. (?) I am so glad for that. I like how Morgan says this illness does not have her, even if she has this illness. I've said it before, "You don't have to be crazy to have POTS, but it helps!" You're right, Dawg--It ain't for chickens! And, yes, Sophia, we do get squirrely! That is for sure!! Makes me wonder what the POTS mascot animal would be......guess that's another topic..... Thanks for everyone's posts,really, whatever the flavor. Just wanted to get some ideas on this. Can't emphasize enough that, at least for my part, I'm really not judging anyone in their feelings. Hard to know that through cyberspace sometimes, so there, I've said it again. More comments/ideas/thoughts/feelings are welcome! Peace and light, LL