dizzygirl

WAhoo!!.. they ust called me this morning and told me that everything is all set for me to go get hooked up to an Iv today.. over at the hospital.. its going to be run over 8 hours instead of 6.. so I'm going to be there until late tonight.. but that is ok if it will help me feel better... and I feel pretty cruddy today.. so here is hoping to some Iv magic!! bring on drippy!! (i named the iv pole/pump during my last hospital stay.. i hadnt slept very well.. and fellt like poo.. and was so tired that i was goofy.. so i named the pole.. and told the nurse that it really needed to be decorated with some colorfull feathers.. and some googley eyes.. and all that jazz.. the nurse laughed at me... and said yeah your right.. then told me to go to sleep in my ice box..--my room-- it was cold cold in there as i made them turn the heat off and bring me a fan.. and it was in the month of january! hahahaha! I was like you think this is cold you should go walk into my bedroom! But anywasy I'm off.. and I am looking forward to feeling HUMAN at least for a few hours!! and being abkle to eat with no pain!! how it helps that.. I really dont know!! but it does

Hi--yeah I think another sleep study is warrented.. and I think I'm going to ask for another one.. I think "alot" of my sleepiness as well as insomnia is POTs realted.. and some not so much.. i dont know.. But I dont think that its my meds.. as I am off like virtually everything but BB's right now.. and am going to start Lyrica here soon..so I dont think that it my meds.. as it started WAY before I was on clonidine or Betaxolol... as far as stress goes.. there definately has been an aggressive decline in health in the past 11-12 months.. triggers are not real clear as to why right now..but neither is the casue of my pots so who knows!! But.. hmm i will let you guys know what they say if I get another sleep study done.. hopefully "i'm acting up" the night of my sleep study!! and am kicking and moving away.. lol.. poor vince!!

hi yeah i had a sleep study done in 2004.. but I wasnt going thru a symptomactic spell the night of the test.. and they wont do another one..despite the obvisous that I think there are some sleep issues going on.. constatn moving of arms and legs during sleep.. i have been told that i do some pretty strange things in my sleep.. such as breathing.. I --my boyfriend tells me that I beat him up in my sleep.(he says taht i kick him.. i really am not a violent person.. but there are alot of things going in in the sleep department.. and docs here wont take me seriously.. I should show them vince bruised legs.. ... a few weeksa go.. my b/f told me that i was sleeping and that i was struggling to breath.. to the point that i caught his attention and he came and checked on me.. so---those are afew examples of i think they need to do another sleep study... waht do you guys think?? oh the sleep study in 2004 showed that i have sleep apnea.. but not to the point of it needing treatment..

Hi folks.. I was wondering is it a normal part of pots to go from having severe butt kicking insomnia (for about 11months).. and now i have flipped into sleepy gear..(not that i'm complaining.. SLEEP!! WAHOOO!! but i sleep on the average of about 17-18-ish hours a day now.. i cant stay awake to save my life!! I wake up pop some pills.. try and eat.. and I'm zonked out again... this started while I was still in toledo... I was so tired.. poor Julie had to keep trying to wake me up.. I like had to drag my self to get up! LOL... shoot had she not kept trying i would have probably just kept on sleeping.. I was/am thinking that it might be the higher dose of clonidine.. but it started before i started the higher dose.. maybe my body is making up for 11 months of sleepless days and nights?? Hmm.. dont know was just wondering if any of your flip flop with insomnia to major sleepiness..(meaning that its an intense urge need to lay down and sleep like NOW!! ) and even though its alot of sleep.. I still feel like I ddint sleep a wink.. make sense?? i know that sleep disturbacnces are a normal part of pots...but boy my body has no even comon ground its one extreme or the other!! sleepygirl... what is that dwarfs name that sleeps alot? is it sleepy? or dopey?? or droppey?? I dont remember!! lol.. only that i have a night gown with a dwarf gritter on the front of it.. and its funny.. only he is the grumpy one!! ahhahahahaha

hmmm.. well i think that having some anxiety is normal consisdering how and waht we deal with with pots!! I'm not sure how to answer this.. only that it "might"help.... i say this b/c.. in my initial applying to SSDI.. my dcotors where convinced that i was a real wack job.. and they put in my records that I was possibly walking the line of having schizophrenia!! reason being is b/c I told them that I had buzzing in my head when I stood up.. and that I saw bright colors flash before my eyes!!.. they thought I was hallucinating...and early in before I got dx with POTS.. they thru every mental health dx at me (bi-polar..that i was going thru rapid manic cycling b/c I'd sleep for days.. then have wicked insomnia and not sleep for weeks!!..) and a list of other things.. But when I had my SSDI hearing they really tried to push me on the mental health end of things and I was firm with them.. that i WAS NOT menatally ill.. and that everything that I feel is b/c of a REAL psysical condition.. and had documnetation to back me.. I guess my point is that yeah I think it might help.. "they seem" more apt to approve you if they think you have a few screws loose... that is my opinion.. I may be a bit off on that.. and I know your not nutty.. geez i need to shut up now b/c i'm babbling.. sorry!! again I dont know maybe other folks can chime in on this one.. but i still think that some level of anxiety is normal living with this condition is turns your life upside down!!.. and I hope that you hear from them soon on your decision.. and I hope that you hear tht you where approved and dont have to go thru a lengthy apeal process.. hang in there dear!!

WOW!! hope taht you are home in comfoy in your own bed by now dear!!! take care. and hope that you are on the road to recovery here soon!! HUGS Linda

i'm so sorry they made you so sick!! that sounds horrible!! I hope that you recovery from this nasty test you had done soon dear.. take it easy!! hugs linda

WHEW!! glad that things came back OK!!.. sounds like you might have allergies ontop of a cold Julie!! have you had a problem with allergies in the past ever?? hope that you get to feeling better soon dear!! BIG HUGS!! Linda

Hi Julie hang in there dear!! let us know how things turn out.. I wanted to comment about them asking you if you smoke.. I "think" that that might be a common question that rad/ techs ask.. they ask me everytime they do a chest x-ray on me if I'm a smoker..(I wheeze alot at time b/c of RLD).. or if I'm exsposed to second hand smoke. they also ask me if I'm pregnant or if I have metal inside my body too. Sorry..trying to lighten the mood and bee funny!! hang in thre Ok!! let us know what they say!! drop me a line if you want to talk Ok!! love and hugs linda

hi i forgot to mention t his and it deserves a thread of its own!!. my local cardio office called me today.. and theya re setting me up at the hospital to recieve a litter of fluids starting off at twice a week.. to see how I do on it!! YIPPEE!!. my local guy has to alk with dr.g.. but the ball is moving finally!! HOORAY!!! I'll have to go thru the short stay unti twice a week.. but that is Ok with me.. s long as i get some fluids.. they make me feel so MUCH better! YIPPE!! I should hepofully get hooked up friday for my first bag!

Hi ya folks! boy waht a day I had today.. to start things off my lovely period greeted my last night.. Oh what a joy this is.. NOT!! no wonder I feel so crappy!! and crabbby!! So i was like great I'm in a for a fun filled time this week!! I went to bed early last night,, b/c I had alot to do today.. Iwas asleep my 11:30 last night!! ((gasp)))) lol.. I'm never in bed that early!.. but anyhow.. I woke this morning at 9 am.. w/ a horrendous migraine.. and i felt like I hadnt slept a wink.. my eys feel (still) like they are going to fall out of there sockets.. and they hurt like the dickens.. and are all swoolen and puffy and droppey looking.. its my permanent potsy look I think...i look like i'm stung out on crack or something.. only its not crack its POTS!! haha befoe I ever attempted getting out of bed I checeked my BP.. is was low about 90-92/55.. I was like Oh yeah.. I wonder how much it will drop when i get up.. ..my pulse was Low this morning too.. I had to go see my neurologist this mornging.. morning time are so BAD!!!!!!!!!.. I took the lift this morning so I ddint have to walk any more the necesary..i get there and they got me in I ddint hve to sit there and wait thank god!!.. So I get into a room and I'm like I gotta tell you I dont feel very well... I feel like I'm going to pass out... she was like are you lightheaded.. I'm like yeah.... as I feel myself grow more and more potsy.. the doc comes in ad she is talking to me.. and I'm finding it increasingly hard to talk. to think for that matter.. thankfully she is patient... all of a sudden I start to feel myself like slouch.(you know the potsy slouch where you cant sit up right. and your body leans to the side.. and you neck feels like jello).. I was thinking oh NO!!.. my Neuro grabbed my wrist and kept asking me if I was allright.. i guess i was looking pretty cute.. and she was searching around my wrist trying to find a pulse.. and wasnt finding one.. and then started checking my other wrist.. and she is staring at me.. she kept talking to me which was good b/c I dont know how I stayed conscious..correction.. stayed upright.. and didnt hit the floor.. I felt myself kind drift off for a moment.. and my hearing started to go squirelly.. and I was trying to say something and couldnt... the doc was shaking my arm for some reason unknown to me...and ws looking at my hands... waht do my hands have to do with me nearly passing out?? then the feeling started to subside.. to a not quite so bad but bad level.. and once I could talk again she goes stick out your tongue...i was like what?? my neuro thinks that I am having seizures...(though I have had like 4 EEG's in the past) and they all show slowed brain functioning.. so she was like well I want to do an.. she thinks that there is more then one thing going on causing my paralysis... possible seizures.. and she thinks (obviously after seeing/feeling like no pulse) that my heart rate is dropping way to low. also causing some things.. apparently if your rate drops to low it can cause some of the things to happen that I'm experiencing.. I asked her waht if the EEg's comes back fine.. what then.. she was like I dont know.. I told about my appointment with dr/g.. and that they dont know either waht is causing such problems.. but she was honest enough to tell me that she wasnt sure waht is going. but atleast she is willing to look into some things.. I told her that I do not want her to out me on a boat load of medications.. b/c I sick and tired of dealing with bad side effects.. and I'm tired of having to get pumped full of meds to head off an allergic reaction.. and that I realy do not like my throat closing. and my chest tightening.. and not being able to swallow or breath b/c of a med.. she was like OK.. BUT--if your EEG comes back that you are having seizures you WILL have to go on an anti seizure med.. I was like allright.. and as far as pain wise and migraines.. she gave me a sample of a rescue med to try.. to see if it helps and if i can tolerate it before I fil a whole script of the stuff.. so she sat with me for a few til i started to feel abit stable. then walked with me ot schedule the eeg. and waht not.. since my "little epsiode" tis morning. i have like like a live walking blob of Jello... i went to the bathroom after my app... as when iget like that i have to pee every 2 minutes.. and i looked in the morror was like wow! no woder she was geting worried!.. my face was a funny looking color.. not quite white.. not wuite pink.. it definatly isnt a healthy look i can tell you that much.. and all the way around my eyes they were big white circles.. and my eylids were pink and my eye whites were blood shot looking.. and of course there are my lips.. which are still a pasty white-purple-blueish looking color.. my bottom lip has a freaky thick white "line"going all the way across it... WEIRD!!! But i still feel like crudd.. and my apin level is going sky high.. so i am looking forward to crawling into bed hear real soon and going to sleep...ahhhhh sleep and warm blankies!!! YEEAH! so i thought i'd share my day with you all.. as it freakin stunk!!! I've decided that my new name is dizzy-jello-smurf -girl... b/c i'm so dizzy i could puke.. my entire body feels like ablob of jello.. and my nice funky colored lips reminds me of a smurf! and girl just b/c... ok i'm loosing my marbles now.. smurf girl signing off

LOL LOL!! BElinda!! girl you are too funny!!.. I know your house is way too hot! whn i was there.. and you kept knocking the thermostat down.. WHEWWWWWWWW__EEEEEEEEEEE-!!!.. I really hope that you parents dont force you to live in the basement t his summer!! LOL.. if all else fails come to my house.. you canbe sue the AC will be running full blast.. and that there will be ice forming around the door frames.. there were last summer!! hahaha! hehehehe.. last summer i ran the AC full blast night and day cause I couldnt get "regulated" and vince would tell me that he had to keep a snow shovel outside my bedroom door b/c i twas so cold that it could ahve been snowing in there" too funny!! so if i see you flaoting along lake erie in a floaty thing i'll know why!! and I'll wave and toss you some gatorade and food!! hahah kidding!! OMG!! I'm loosing it! hopefully grubb will talk some sense into some peeps for ya!! and you wont have the battle of the thermostate anymore!!.. w have them hear and I always win!! I'm so spoiled!

claire! that si great!! I'm so gald that you are fighting this and tht you are gettinga second opinion!! WAHOO for you!! HUGS linda

glad that you are finally going to be seen!! make sure to get that chest x-ray done!! hopefully they can help you with this!! HUGS Linda

Julie Hi dear!! i hope that you start feeling better soon!! I know that last week you where feeling pretty rotten when I saw you!! :( feel better!! get alll your furry babies together..(dont lift spencer!! let him jump up!! lol) and climb in bed and take a nice nap.. pamper your self!! and yes please do call you PCP soon and get you chest listened too.. you dont want an upper respitory infection to turn into pneumonia!! i had pneumonia right around this time alst year.. and it knocked me down for months.. so I know you feel like poo.. but if ron has a day off during the week this week can you have him drive you to the docs? HMMM...??? hang in there Julie.. feel better soon dear!! lots of HUGS :)

mymymy!! I really hope that you start feeling better soon!! and for goodness sakes dear.. dont worry about emails and Pm's!!.. that is the least of your worries right now!! we know you love us!! and we love you!! and it'll all be here when you get back up on your feet ok!! take care dear!! HUGS Linda

hi-- no I have not had the challenge test done~~ i did not know that there was such a thing.. goes to show that you learn something new everyday!! lol.. Um I was on the patch in 2003 (dr. grubb put me on it..).. and i was on the patch till last summer.. when they started taking me off like every medication that i was on b/c my Bp's were WAY low.. like 45-50/like 20/23!!EKKKKKKKKKKKKK!! and I was at that point on the #3 clonidine patch.. well clonidine patches worked well for me.. other then skin irriitations ... I started back on the clonidine in pill form back in like November I think. and this is the 3rd time I've increased the dose.. the other 2 times i took it before bed.. so it didnt really matter.. now I take the morning dose.. and HOLY COW!!!.. I like turn into a pile of goo!! lol.. I'm going to call bev or my local cardiology guy .. and inquire about that clonidine challenge thing!! I bet ya its why I feel so mushy and tired.. (aside from my usual butt dragging!) lol

hmm i have sever pain issues.. of an unknown origin.. and ahve had it since i was about 11-12 yrs old.. and I'm 24 now... Um i have tried everything under the sun to help with pain.. and what i have found that helps the most.. is a combo dose of an anti nausea med ( b/c the pain is so severe that you want to puke your guts up at times).. and torodol.. given directly into an IV// the pain med demerol also helps temporarily.. and sometimes these meds help w/ pain.. Um i spoke with somebody recently who experiences exactly that same kind of mind blowing pain that i have.. and she suggested using aspecreme for pain.. and regualr old Motrin... I have not tried these yet but thought that i would throw them out there and see if they might help you.... i hope that you get some apin relief soon dear take care linda

hehehe! i'm glad! laughter is the worlds best medicine!! take care.. and seriously talk to your GI doc or PCP somebody about rying levsin.. sublingual (sp??) it does offer some relief.. it hasa few side efects.. but.. does help.. take care dear!! and keep on laughing!! hugs linda

hi ya folks.. i am wondering.. I started a higher dose of clonidine over the past 3-4 days or so.. and I have noticed that the past 3 days.. that after about 30 minutes of taking the higher dose of clonidine taht i am beyond tired and exhausted.. and even though I slept a good 12-14 hours soldily before i got up for the day.. that with in 30-60 minutes that i'm out like a light again.. for another 4-6 hours.. of hevy sleeping..believe you me..after the 11 month stint of wicked bad insomnia I'm not complaining!! But at fisrt I though I as sleeping much more because of the trip to Ohio I just took.. But I noticed the severe exhaustion and unrelenting fatigue over the past few days shortly after i take clonidine.. and I'm wondering if this is normal?? I usuaully take it ebfore before bed. now I take a small dose when i wake up in the morning along with my regualr BB.. So I'm thinking that maybe I'm still reeling from my trip.. which is real likely.. and tht I'm also adjusting to my new dose of meds?? and maybe it slowing me down a tad too much?? thoughts anyone? my Bp this afternoon when I woke up (yeah I slept late today!) then sletp another 5 hours ontop of that!! ) was low.. it was 90/53 p.54.. hmm.. and it didnt get much hogher then this today.. a sleepy dizzygirl..

hi jacquie--the same thing ahppens to me.. I will wake up in the middle of the night or wake up in the morning.. absolutely starving!!.. if i wake up in the middle of the night hungry.. I usualy can not go to sleep till i get up and eat something.. I usually go with scrammbled eggs and toast.. or something salty (and startchy--like a bit of mashed taters and gravy..not thbest but it fills me up quickly..) But I find that too when I wake up like that that within- minutes of eating.. I'm a running to the potty.. w/sever gut pain.. the chills.. and major nausea.. or I just wake up with the pain in the mniddle of the night.. have you by chance tried levsin yet for when you wake up w/ tummy pain?? it can help woth things.. I take it when I realy bad off.. or when I have to travel... kinda funny story here.. but when I was like 16-17 yrs. old.. I used to sleep walk quite a bit.. only I must have been quite hungry when i sleep walked b/c I'd wake up and I would find granola bar wrappers-hoho wrapers (little debbie's)..a jar of green olives--empty-cookies- and usually some kind of drink on my bed side table..eaten.. and I would always be amazed at the amount of food that was sitting there.. and often wondered where it came from!! LOL.. i guess i was potsy and hungry then to in the middle of the night !! when I would actually wake up and be aware of what i was doing.. I foten would down a jar of green olives.. and drink like a quart of milk just like that!! ~~~potsy moment~~ I was like 16 then hahahaha.. so ok now you guys know I'm a real piggy of a sleep walking stuffing my face kinda girl!! hhahahaha! hope that you feel better jacquie! and that you are smiling at my insanity of night time binging!! LOL-take care dear! piggygirl!!

I will definatly enjoy the ducks! especially the baby ones! and I will most certainly mind the granny!! lol

yeah lauren.. I though Migraine when I saw you topic heading.. and yes they def. can make you pots symptoms worse.. i sometimes before or during a bad spell or syncope.. will get exsplotions of sometime bright white light infront of my eyes. weather they are opened or closed.. and other times..like a few months ago.. right befoe passing out. i was surging very bad.. and all i could see was these really bright vibrant colors flashing before my face/eyes.. and it made me severe nauseated... its not a good feeling or experience i know. are you prone to migraines?? You sometimes can get migraine aura's.. with out feeling the pain of a migraine.. that sometimes happens to me.. as I have the aura's before my eye's before I go to bed sometimes allmost everynight.. sometime mild sometimes not.. mild.. and judging on the severity of the flashing lights.. will generally kinda of set me up for the next day of how I'm going to feel... Um somebody recently suggested to me that . if I'm getting the onset of a migraine.. that I drink alot fo sodium.. meaning drink 3-4 cups of broth..(chicken broth).. that it can be a sign that your body is in need of some fluids and sodium.. she said Pump up the volume!!.. you could try it and see if it helps you.. as I know the flashing lights can be very scary..especially if you have never expereinced them before!.. or if you ave.. if they are more severe that is scary too.. my migraine doc told me that i get the constant aura's b/c my brain is firing too much...and there is too much activity going in side my head. 9meaning my brain firing in overdrive..0 if that makes sense.. hang in there dear!! you are not alone!! dizzygirl

hi I thought i'd jump in on this topic as well.. I experience out of body type things when my symptoms are very severe.. or when i an having severe anaphalctic reaction to medications.. I believe mine happen b/c my Bp just bottoms outs.. and my body well feels like it is dying.. and it disconnects in an attempt to survive?? i'm not really sure.. but for me.. I will typically feel very bad on the potsy front.. my that i mean I'm will be so beyond cold.. that i'm cold from the inside out..... and my whole body )especially my feet) will be like ice.. and it is the painful coldness too... my insides will feel like they are jumping around inside my body.. internal shakes.. and it will move to the outside of my body. where i shake uncontrolably... no amount of blankets on me will warm me up.. Once a few summersw ago this happened on a hot august summer day.. mind you its realy hot and humid outside.. and i'm burried under a sea of blankets! But anayways I will shake uncontrollably..and I will get the chills.. and goose bumps all over.. I will start to feel fuzzy headed.. and my vision will start to go haywire.. I tend to get a very loud buzzing in my ears.. and the hsaking will get much worse.. i pass out... but during the passing out my inner self kind of like floats out of my body.. if this makes any sense.. i am disconnected from my body..literally.. I will float above my body and see my self laying there unable to move.. but I'm am able to think..does that makes sense? i'm aware.. very aware of what is happening..but i can not move.. not even if i wanted to.. i do not know how long these things last.... Only that the first time.. it happened to me.. tht I was having a severe reaction to a medication.. and I really thought that i was dying.. or totally loosing my mind.. b/c right before I returned to my body.. and stopped floating above it.. I got an overwhelming feeling of love -peace and comfort..(remember--severe reaction to meds!).. and I thought well my god if I am going to die today that i'm not going to die alone..they were feelings that were beyond anything that you can feel with human contact..I dont know how to explain it other then it was a spirtiual thing that happened to me that day.. aside from the allergic reaction... But when i felt that "feeling" i felt a warmth rush thru my body.. and i felt calm once i returned to a normal state of being.. and i was not freaked out..I have no other explaination for it other then it being a higher power intervention..b/c I think that i should have died that day.. but some reason I did not.. so once i returned to my body.. I could breath normally again.. and i had stopped shaking uncontrollably..i tend to be very weak after one of these things happen and will tend to sleep for several days afterwards.. I hope you all dont think I am nuts sharing my expereince with you.. but.. they happen often now... especially when I paralysis during syncope.. it used to be once once in a great while.now its happens on aregular basis.. and its still freaks me out.. but i dont fear it..b/c i know that i'm not dying! even though i'm disconnected from myself i'm fully aware and able to think.. I get little spells and big spells..

i fell horrible.. like crap.. and like a walking zombie most of the time.. if I dont sleep.. 9which is alot of the time these days!! i feel your pain dear!!