Lulu

In the continuing saga of a lunatic (me) who just loves to pass out, get poked with needles and have ppl look at me like i've sprouted a third eye when telling them about my disorder.......

last night i went to ER for IV fluids, per my PCP and Dr. G, for a temporary fix until we can figure out what is really wrong with my hydration situation.... anyhoo, i got into a fight w/ the ER doc !!(shades of Janine kicking every doc in sight flashing through my head).Oh, it was a pretty calm "discussion" but I was hot!! the doc said he didn't understand dysautonomia, but since all my vitals were fine, he wasn't going to give me fluids. i told him HE didn't understand, the fluids helped, we don't know why, and I was following my doctor's order and he could feel free to call him, AND there was a growing body of evidence from the past week (6 sticks and 6 L of fluid, each with the result of a feeling-much-better Lulu) that showed the IV therapy worked. well, YOU don't understand, he said, there's no reason they should work. NO, YOU, don't understand, doctor...and i impressed upon him that i hadn't come to the hospital because i couldn't get enough harassment in the rest of my life or loved being poked and waiting around. and NO neither of us understood why it worked but it did. then he said he would give me fluids, ok, sure. arrgh! i broke into tears when he left and felt like a complete nutball! it was like something from bugs bunny arguing with daffy duck (or should I say daffy DOC!)

when i got home, i gave my hospital ID bracelet (with the doc's name on it) to my dog, who happily destroyed it in effigy.

LOCK ME UP! I really think i'm losing it lately.

what is the silliesst/craziest thing you've done in pursuit of treatment or to cope with the lack thereof?

love and laughs,

lulu

yep, used to get the same thing! now on nexium twice a day, which is better. used to take levsin and zofran for pain and nausea. i think it's totally a potsy symptom!

good luck and feel better, jaquie!

love and light,

lulu

Dr. G told me I had the hyperadrenergic form, because my BP would go up on standing. my BP & HR are now well-controlled with Labetalol, Clonidine and Norvasc, generally runs in the one-teens over seventy something and HR around 50-60. but i still wake up with the shakes, and have BP spikes, only now they won't kill me and a spike in HR goes into the 80's. but i'm still having lots of problems......so i don't know what's going on.

my BP doesn't go up that much on standing anymore (it used to shoot up 30 points or more) so now when i'm at the ER, they do my othostatics (on bed, sitting, standing) and there's no significant change. then they look at me like i'm nuts! but i'm still having syncope nearly everyday......hope Dr. G can offer some insight when i talk to his office friday.

is there such a thing as mixed hyper & hypotension?

love and light,

lulu

hey y'all

even tho i've been hanging in there this quarter with all my freaky hydration issues, my instructor said i might want to consider sitting out a year!! ACK! i can't do that b/c i'll have MAJOR DOMO student loans to pay back (which are on in school deferment now) and I'M KEEPING UP WITH THE WORK and my doctors have continued to release me to do clinicals. i know the school is concerned, but i've been completely kosher so far, needed some flexibility, yeah, but am carrying a B+ average and passing all the clincial aspects....so what's the problem?

i DON"T want to have to leave school! it's the thing that gets me moving everyday. (Even the days i can't move, i'm doing homework and making arrangements....I love nursing school!) my clinical instructor today told me it was not up to the faculty to boot me out, that it was up to my docs to continue to release me abd that she was pulling for me, that was good to hear. i got skewered at the last school because they decided they weren't going to let me in clinicals, no matter what my docs said (they wouldn't make them up with me, even tho i was ready and able.....kind of a shady deal) i don't think my new school would pull the same crud, but i want to be prepared.

i have a meeting with the school disability advisor on thursday and need to know about "reasonable accommodation" and my rights as a student with a disability. i see my PCP tomorrow (get labs done and a standing outpt order for 1 L fluids/day as needed) and talk to Dr. G on Friday, so we should be getting the ball rolling as far as treatments that may work.....if I get really bad, i *will* pull out, but i just think it's so premature at this point, especially since we don't know if i can get back to where i was......maybe i need to cut back on work and just focus on school til i'm "bettter" again? i dunno.

Any ideas? someone who has dealt with the ADA and school?

peace and light,

lulu

j-9

all i can say is a sympathetic ARRRRRRRGHGGGGGHGGHGHGHGHGGHGH!!!! omg, i can't even freaking believe it! like POTS isn't bad enough? they have to put you through some medical obstacle course torture test?

my thoughts are with you! i hope you are able to get things resolved and stay healthy as you can be!

love and light,

lunie

WOw! That is good news! I wish you well in your new collaborative relationship with your new doctor. That is excellent that she is so interested and willing to learn! it is sad to say, but how unusual is that? shouldn't all docs be like that? sigh. I wish!

I hope you continue to have a good relationship with her and that you feel better and better too.

Congrats! keep us posted!

love and light,

lulu

quit smoking 3 months ago. would have dizzy spells sometimes after a smoke and sometimes it helped me feel better. honestly! but i felt i really needed to get serious about my health and being a student nurse made smoking feel hypocritical.

i tried half a puff a couple weeks ago and thought i would throw up. blecch! i'm definitely over it! hooray! it took my years and years to quit! but i still crave the "helpful" part of how it sometimes made me feel, but not the smell or taste or money/time lost.

but here's a really weird thing: i quit smoking and have had an exacerbation/progression that has coincided with my quitting and "taking better care of myself" like more fluids and vitamins and weight loss. its strange. my symptoms were better controlled when i smoke, drank, ate horribly and was fat. (not that i'm going back.....i' just think it is strange....anybody got any possible explanations?) and i'm certainly not advocating those unhealthy behaviors for anyone else, BTW!!

love and light

lulu

same thing with me, getting up in AM, sometimes with the shakes and then a faint for good measure, but rolling over in bed and/or having to get up for bathroom trips. haven't recorded the rates but i can FEEL my heart about to leap from my chest!

also had palps when i would lay down. added an extra 1/2 dose of labetalol at night (per Beverly) and that seemed to do the trick.

i agree with that idea that it's an ANS "startle." i hate it tho.

ok, i'll bite. what do you guys call a storm?

i've never called the various things my body pulls on me a "storm" or had a doc tell me that's what they are....so i'm curious as to what symptoms/feelings/stuff you are referring to. i've heard it on the forum a couple times and think i'm the only one who doesn't know what it is, even tho i probably have them!

thanks!

lulu

Hi Patti,

Even if she does have a positive TB test, they usually follow it up with a chest x-ray to make sure no TB is present. i have a friend who does not have TB, but as a fellow nursing student she has to be tested every year and she always is positive (I forget the reason) anyway, she gets the chest x-ray and it's no problem.

Hope this helps!

Lulu

good luck! we're all pulling for ya. (although an interesting headline about someone we know would be quite the collector's item......)just kidding.

being prepared is half the battle, and you ARE prepared. maybe you can visualize the appt going well? somtimes i think i doom myself to failure when i can only thing about everything getting messed up and misunderstood. just a suggestion.

hope all goes well. keep us posted!

( i feel you on the shaving thing.....i took over two hours to do mine and still missed spots, which was totally embarrassing.....all smooth, then a 2x3 section of sasquatch where it was obvious that i was really a cavewoman who just got purtied up for the doctor. HA ! i had like five of those patches! LOL)

love and light,

lulu

laura,

i have been thinking about that too, the days i back off a bit on the intake i feel a teensy better, but ultimately end up crashing. i double my cymbalta today and it's been the worse yet. does anyone else have probs w/ that med?

on my way to ER for more fluids to see if it helps. thank you all for your concern.

love and light,

lulu

well, this is pretty cool and also kinda scary.

Cool part: Beverly just called me here at home at 930p because she was concerned about my recent exacerbation and hadn't been able to get a hold of me before now. WOW!! i was really touched that she called and talked to me for half hour or so. i don't care when she calls....it was good to be in contact!!

the scary part: she wants me to double up on the cymbalta (which i'm not sure how that will help/hurt, but i'll try i guess, since i'm already on a low dose) and she's suggesting perhaps taking procrit shots 1/wk to build blood volume. i'm leery of adding another med. i'd almost rather have a central line put in than start another med. in fact, i would.

of course, she wants me to call friday after seeing my PCP and check my lab values again. and get checked for DM and DI. she doesn't recommend salt-loading and is concerned that the procrit will also raise my blood pressure. (and gulp, would they give me yet another med to combat that?) so, i know more now, but paradoxically, still have more questions. Beverly did think she'd have an opportunity to talk to Dr. Grubb about this by Friday. so maybe i'll get some more answers soon.

my husband posits that i'm getting the cart before the horse by focusing on the IV therapy. maybe i am, but i just have *this feeling* that that is what i need. and why shouldn't that intuition be reinforced by the fact that everytime i've gotten fluids, it has helped and i've been asymptomatic for 24-36 hours?

if i'm not positive for DM or DI, i don't understand the reluctance to prescribe IV therapy for me, especially when it is working and helps me feel better. i do realize there is a risk of infection, but i'm nurse in training and can certainly handle keeping a port sterile. i just don't want this to get any worse and i want something that works with my body & alleviates symptoms.

sorry to be like freaking obsessed with this lately, but my quality of life has gone from pretty normal to the pits inside of 8 weeks and i don't want to go back to where i was before, with no ability to do anything hardly. i've just got to believe there is a way. but i'm just scared.

thanks for listening,

peace to all of you,

lulu

linda

go to the ER now!!

coffee ground vomit indicates a GI bleed a seriuos medical condition that needs to be evaluated right away. i don't mean to scare you. but that is a RED FLAG symptom!

good luck and keep me posted!

love, light and courage

Lulu

Hi, Jen,

I'm glad you got an accurate dx, too! now the healing can begin. i responded very well to meds initially and then had them changed, responded well to those for the past couple years. i've been basically able to pass for a "normal" person, except when i'm passing out lol

although this is kind of a bummer, i felt like i needed to tell you that you can recover almost completely (i have, but ive never been 100%, but i am good enough to do a LOT of things and handle a packed, but paced, schedule. ) but then bottom out again: i've also recently had a progression of unknown origin after being well-maintained for a year or more and it's scaring the heck out of me.

i have multiple ups and downs with this illness. some months i'm dead-on and some months i just want to die.it will vary from person to person, as has been mentioned. so yes, you can get all the way better and then have 1 step forward and a half or 2 steps back. if you have a good doc and know your body, in the long run, you will get along fine, even if your life is never the same.

i wish you all the best care, and strength and courage.

love and light

Lulu

hi, sara,

welcome to the forum! you are not alone and no one here would think you were making it up (based on the stories i've read). i agree with the previous....get a TTT and a cardiologist/POTS specialist.

once you know more, you can do more and learn more of how to cope with your symptoms. there is a lot of good advice in this forum. i would recommend searching around for common symptoms and see what's out there. there is a lot of collective wisdom and advice in this forum which you can use to your advantage until things start happening for you in the dx department.

i wish you luck and better days ahead. remember to pace yourself. you'll learn what that means for you, just be patient with yourself and doctors.

love and light,

Lulu

ps make sure they give you a proper TTT and that no one tries to jam the shoe in your shin to "keep you from passing out" it happened to me, i swear! i was stunned and too weak to stop it. PM me if you have any questions about TTT.

i think maybe it is. i had that same experience when i did a EEG, and i felt faint and horrible and near-syncopal. then they said my test was normal (surprise) and it was impossible that i was fainting more than 4-5 times a day, which i WAS and still DO. what do they know about my body anyway? or how my days really go?

i'll never do an EEG again. it didn't prove anything, and it was excrucitating. anyone else have this, too?

love and light,

Lulu

again, my thanks for the caring advice. i don't salt load due to extreme hypertension and Dr. Grubb doesn't recommend it. plus it's damaging to my kidneys, which have been thru the wringer with 15+ stones. i do like the idea of talking to a quality review person and laying it down for them, which may gain me nothing but the satisfaction that someone is hearing how unhappy i am about this.

the orders of the ER doc were revoked by the head of ER, so that's a dead end. i can guess why: CYA. they want to have me do a bunch of tests, draw blood, pee in a cup, run an EKG, (Ie. be seen in ER so they can EVALUATE me) all of which have come back normal every single time--it's not something these minor-leaguers are gonna figure out or understand, so they just badger me into going in through the ER and asking questions i can't answer again. if my own doc had actually ordered outpt fluids instead of "go to the ER as needed." we wouldn't have a problem, but he didn't and hence the politics of a small town hospital.

what all this boils down to is i'll have another trip to the ER--tomorrow probably--and just go through the whole thing til i see my doc on wednesday, who should be able to tell me whether i can get a standing order outpt or home supplies or a port a cath. i'm sure he'lll want me to go through a bunch of tests...which is Ok. i'm curious myself as to why now? this is happening. but i want to make sure i get symptom relief and can stay in school. there's worse things in this world than what i'm facing, i know in the big picture this isn't even ablip. but it my life and health and happiness & i just don't want to get turned away for requesting fluids. could that happen? does anybody know? it's not like i'm asking for morphine! i just want to get some relief. ha ha my drug of choice? Normal Saline!! LOL

i hope i get a call from Dr. Grubb's office before i see my PCP. His input would go along way toward helping this along. I'm compiling some s/s, research, recommendations, questions and ideas to talk to my PCP about, including getting tested for DM or DI. my next appt with Beverlly is in SEPT. i have to get some resolution or limp along procedure in hand before then. i'm sure once i talk to my PCP who is way cool and hear from Grubb's we'll be off to see the wizard and having a grand ole time getting this figured out.

thanks again for more help. you all are awesome! may you be blessed!

Love and light,

Lulu

Name: Lulu

Birthplace: North Central, OH. I now live in a house across from the hospital i was born in. what a long strange trip it's been.....i keep expecting Rod Serling to step from a closet.....

Kids: nope

Pets: 2 dogs, 2 cats

Favorite color: all o them

Favorite flower: iris and roses that are salmon pink

Kitchen theme: "eclectic transitional" with a fruit theme, kind of like my life

Favorite drink: used to be assorted wines, mixed cocktails, now i love chocolate soy milk

Last TV show you watched: House on TNT, after Monk and lots of Law & Order at my granma's house (she's on vacation and we don't have TV...it's been a secret treat for us)

Last movie you rented: borrow movies from library...last one was an Inspector Morse and a few Sherlock Holmes

Favorite food: pizza w/o cheese, or an occasional marinated salmon steak.

Favorite TV show: Law & order, all the spin offs, too

Red or Pink: both

Favorite ice cream: can't eat it. tofutti cuties are good when i can afford them

Favorite crayon color: green

Ever bungee jumped? nope.. i think i would end up passed out at the end of a rope and freaking some people out

Eye color: blue most days.. they tend to change color from blue to grey to green

Hair color: brown with auburn highlights. i keep dyeing the gray to brown, but then my hair turns red. weird

Farthest you have ever been: Mexico, in the Yucatan, or the Pacific in Oregon. That was awesome. Or Montral, which i love. i'm not sure which is farthest. don't know if i'm on this planet some of the time lol

Siblings: a younger sister.

Last time you cried: a few weeks ago

Favorite game: chess or parcheesi

Black or White? both

Rollingstones or The Beatles: well, i like early stones and i like all the beatles. the stones look weird playing now, huh? but they're still rockin....it's just weird.

Last food you ate: raisin brain and soy milk

Diamonds or sapphires: pearls

Beach or the mountains: both and the plains and the forests, any nature is wonderful!

Sweats or jeans: sweat pants at home my comfy jean when out

Ever went skinny dipping: i plead the fifth

Married more than once: yeah, got the RIGHT guy the second time around. he is my heart, such a joy and tower of strength for me. and he makes me laugh. i'd be lost without him.

What book are you reading now: Dead as a Scone, a charming little english murder mystery, oh yes and sevearl hundred pages of nursing books.

Hobbies: playing mah-jongg, surging the web, hanging out with my hubby, reading

Favorite actor: david duchovny, dustin hoffman

Favorite actress: stephani march, lily tomlin

Favorite candy bar: can't eat these anymore, but i like a couple mini-york peppermint patties or the REALLy good chocolate that organic and 85+% cacao. YUM i can eat like 2 pieces.

Ever toilet papered someones house: i plead the fifth....

Gatorade: gotta have it! a 1:3 mix so i don't get too much salt and sugar

Favorite Fruit: mangoes

Men with facial hair? as long as it looks nice and he's comfortable with it, i'm more interested in what is behind the face. my husband does have a full beard now. i think he looks like a honey bear. if he ever wants to change it again, that's OK, because i love him, not whether he has a mustache or is balding or whatever.

Steak or lobster: um neither. yuck!

Gold or silver: silver

Dream vacation:scotland, UK, greece, egypt, india, china. oh heck, i want to go everywhere!

favorite singer: too many to list....i'm a dj.....love women in music, old school jazz, i have very eclectic musical tastes.

glad you're feeling better!! and didn't have to go to ER. they can be so nasty. although i've gotten some nice ones now and again.

take good care and thanks for the update!

love and light,

lulu

MM is totally right about getting a copy for yourself. the first TTT i did was positive for NCS. years later when i was feeling bad again (POTS start up) the doctor didn't seem to have the record and i had to have another one done. for me, TTT are pretty yucky, i usually end up puking and passing out and feeling pretty cruddy for the rest of the day. and then did push pretty hard for me to get moving afterward, they had more pts to test. so it wasn't exactly pleasant.......

but at the second TTT, one of the nurses jammed her shoe into my shin (!) and told me "don't pass out" "keep your eyes open and don't pass out" her shoe in my shin HURT! and i was too out of it to tell her to STOP or get her name. and my husband wasn't allowed to go in with me that time. i suggest you have someone else there with you when they do the test and advocate/bodyguard for you. while i'm sure my second reading was probably a fluke of ppl not knowing how to do a TTT properly....just protect yourself so the reading you get is a good one. the second one i had was "inconclusive" (wonder why HA HA) but Dr. Grubb said it was POTS.

i think of the TTT as the Iron Maiden Torture Test. But i have to admit, without that first one, i'd never have gotten better or know about the wonderful world of dysautonomia.

and i agree, the doc that said you can only get it in childhood is WRONG---you can be born with it, have it w/ severe trauma, have it with a baby or have it after a bout with a virus. good luck! and let us know how it goes!

love and light,

lulu

Thanks, Ernie & MM for your suggestions--

i feel better in the light of day today. (and cuz i got a L of fluids last night) boy, i wrote a whole lot last night! i wasn't in a real good place. i am still afraid they won't give me fluids at the ER for some reason, even tho my own doc has told me to do it. and it's my only shot to make it thru til i see my PCP wednesday. do you think they would turn me away at the ER?

unfortunately, we don't have IV centers in my small town (outside of a specialty clinic in the hospital), but maybe they have such a place in a near-by bigger city? i'll ask my PCP. i will definitely ask my doc about geting set up at outpatient for "REAL" through him (i think they didn't want to do what the ER doc said...some politics or something weird was going on) or the doing my own at home if i can get a port-a-cath (i know how to do central lines & am not sqeamish about doing my own needles). I don't know if the DDAVP is an option because if i retain the urine, i get kidney and bladder stones. i'm not sure what it would do to me. but i'll surely ask my PCP & urologist what they think.

i have noticed a somewhat decrease in the "output" tho i'm still drinking the same or more, and i still feel weird when i'm "down a quart." i expect dr. grubb will have some ideas for me. i did get a call that my msg was in his/beverly inbox and someone would be getting with me. so he has the message, will just have to wait and see, and remember to breathe. the waiting and wondering and worrying i think is even harder then POTS/NCS itself sometimes. does anyone else feel this way?????

whose sig file reads "today is the tomorrow i worried about yesterday and all is well?" that is brilliant for me today. wise words.

love and light,

a far more stable lulu, but still worried lulu

hey y'all

this is an update to my post the other day about not being able to stay hydrated......i'm still not able to stay hydrated, or maybe i AM hydrated & i just feel wonky....my own word for POTSy....but IV fluids really help me--the near-syncopal feeling goes away, i'm not shaky, the palpitations decrease, i have better thermoregulation, i just feel better. i was thrilled to have the ER doc i saw wednesday give me a temporary standing order for fluids til i can see my PCP. (still no word from Dr. Grubb's office) at ER, got 1 litre of fluids and felt better. no reason they can find why i should need them (all my evaluations were "normal" except i felt like crud before & felt better after fluids)....i'm to follow up w/ my doc. ok, fine. got standing orders, thought this would be great to get me thru.

but today i tested that theory.....went to hospital to get fluids, was sent to the floor, where a very nice but confused nurse got a good line in and gave me blankets and juice. it was wonderful! no waiting in the ER and trying to answer a bunch of questions that just make the questioner look at me like i have 14 heads. i even got a warm blanket and a slow drip, which is best for me.

and then..... her supervisor came in and said if i came back i'd have to go thru the ER and she had called so and so on call and so & so the ER supervisor and they agreed 100%>>>i have to go through the ER & they had the ER doc's orders revoked. sigh. the nurse supervisor also asked me "why do you think you need fluids?" double sigh. i had no response beyond they help me feel better. i felt accused and blamed. and like i was a drug seeker or something. oh, yeah, i can't get enough normal saline or figure out how to make my life more complicated, so i keep coming to the hospital. it's my favorite thing in the world. NOT! i realize this is probably "CYA" on their part, but i felt really bad (emotionally) when i left. i still do. (can't you tell? LOL)

the truth is i just can't drink enough in my waking hours to feel right. i'm just so tired of explaining myself everytime. i'm so frustrated, too. those fluids wednesday night got me through two days of nursing clinicals and a four hour work shift. yeah, i was tired as heck, but i made it! i KNOW i need the IV therapy, i don't know why and i'm now on a first name basis with the ER nurses.

i'm just venting, i hope you'll pardon this. i know you all have been there, in some shape or form. i truly believe it's my dysautonomia triggering these episodes & the fluids help. i just wish i could do a Vulcan Mind Meld with these folks, especially when i'm not feeling well, all POTSy and wonky and tired. it's so tiring to explain. and i'll in all likelihood need at least one more "infusion" before wednesday when i see my own doc.

i have begun each day since that "can't stay hydrated post" with pedialyte, more in the afternoon and 16 oz of water each hour. i wear a watch that vibrates on the hour and i go drink 2 glasses of water. i have to stop about 8-9 pm or i have to stay up all night with bathroom trips. i don't know what else i can do but wait. after 8 years of dysautonomia i should be used to this, right? having to wait, getting poked, having doctors tell me they don't know what's wrong or that nothing is wrong or worse, ask ME why i "have so many things wrong with me."

i just can't give up. i feel like i'm better than i've been, but still have so far to go. sorry for the self-pity rant. i'm on the edge of despairing. i'm glad you all are out there. and while i really am not happy that some of us are having bad days today or the past few days, it helps to know i'm not really alone.

what do you do when the doctors (or nurses) won't listen to what you need and seem to thwart you at every turn? i'm feeling outmaneuvered. all ideas welcome. my biggest fear is they will deny me fluids if i go again to the ER. (it will be my 4th time in as many weeks, 3 this week alone.) could they do that? my own doc told me to go to the ER.

peace and light,

a grumpy, but hanging in there lulu

oh, may you be blessed, Be Still!

what great ideas! i agree those questions aren't valid, but your suggestions as to answers are MUCH better than saying "I don't know" (very vague) or nothing (doc thinks you are unresponsive).

Thanks for posting this. any other ideas? Please please share! i agree, this is the perfect venue to put our collective experience/ideas to use.

love and light,

Lulu

oh yeah, i hate those lights. i feel like i'm going to have a seizure when a few drive by. i get a headache too, but only after a long while. i usually change the mirror position so it's not so bright and don't look directly into the lights of oncoming traffic. then take tylenol when i get home if needed. don't have the choice about driving at night (or early AM) all the time.....

love and light (but not big bright SUV light)

Lulu