dizzygirl

YOU go girl!! Persephone I am SOOOOOOOOOOOO very proud of you!! alot has been thrown at you again this term at oxford.. but you made it thru!! GIRL!! you are an inspiration!! I'm proud of you!! Yes i think you will make it thru you next term.. it will be ahrd but I think that you can do if you keep things realistic!! and know your limits... and ask for help when you need it!! ( something I need to learn how to do!! lol ) I know what you mean about pots..either it would go away or you'd just like to be "DONE with it"... But my goodness Persephone!! look at all that you have accomplished!! YOU need to give your self alot of credit dear.. I dont think that i could do what you have and our doing... BIG HUGS!!! congrats Persephone!! hugslinda

I'm still feeling good!! only complaint I have is my legs are not working quite right..(kinda stumbling along like a drunk person).. :ast night at walmart.. I'd been on my feet to long waiting in line.. and low and behold.. I got potsy and I fell into a display of lightbulbs!!.. and my legsa started to give way.. that was embarrassing more then anything.. people looked at me like I was wacked out.. Inwas standing there. and next thing I know.. I greeting lightbulbs.... But I slept exceptionally well last night... and am hoping that i will keep feeling good thru out the day... I'm not dizzy ot tachy today !! YEAH!! thank god for IV"S!! Lois~~ is a medaport the same as a medline?? I was going to ask about one of them.. b/c the IV's..yesterday was bit hard .. and the IV HURT!! normally they dont really bother me.. .. But i tink that consistantly getting poked with an IV weekly is starting to reak havoc on my one good vein!.. going to call dr.g's and see about a medline or medaport.. would make things so much easier!! How are you doing lois??? you ok?? take care folks!!

i can realte to the dream thing during surging.. only i dream that i'm in a race-car.. and i cant get out.. and it makes me SOOOOOOO sick.. I dont know dear i know our bodies are super senstive.. and that any even little change or excersion is sometimes too mcuh.. i hope that you feel better soon!! take care love and hugs linda

Um-- I dont know my eyes often get blood shot.. I think its b/c sometimes my hr is too high. and my BP is all over the map.. also when my pain level is up my eyes are blood shot.. and pretty much when ever they get like that.. I chalk it up to a potsy thing.. i didnt even notice it.. the nurse did.. I can remember going to apply for SSDI and my right eye was severe blood shot.. blood vessels actually burst in ym eye it was horrible!... About the IV's I have been after t his for quite along time now.. back in 2003??? I would find that after an ER trip and they would pump full of fluids that I would feel better for a while.. and then I read info on one of these sites that IV fluids help.. so i talked to my doc (cardio) about it.. and he agreed to give it a try and see if it helped.. he admitted me for an infusion.. and at that time it did not help me on that particular day..so he didnt persue it.. however over the past year they help me dramtically.. so I talked to my potsy doc about it IV's.. and after a while he agree'd that I could get them a few times a week.. we tried to get them so that I could get them done here at home.. and have a nurse come monitor things.. but insurance would not pay for at home IV use.. so my cardiologist here at home.. talked/worked with my potsy doc.. and they agree'd that i could have it done over at the hospital 1-2 times a week.. and they do it thru a short stay unit..at the hospital.. and I'm there about 9-10 hours at a time.. so far they have not had to keep me over night.. but they option is there if I'm not doing well.. it baffles me that insurance companies will pay for me to be admitted multiple times a month to the hospital.. but they wont pay for in home use of IV fluid!! I guess I dont mind going to the hospital.. they typically give me my own room... and I' have the same nurses everytime.. and theya re nice.. and atleast have some inderstanding and care..! Also after i refused to go to the ER any more.. b/c they are so rude!..i told them that if they wanted me to go to the hospital from now on they have to direct admit me..b/c the ER is just a nightmare! But you could start with seeing if your doc would agree to Iv for treatment.. and then check with your insurance company about if they will pay for it... and a home health nurse.. good luck to you and yes I hope for many more "GOOD DAYS"!!!!!!!!!!!! hooray!! I'm still feeling good!! 9 hours later!! HOORAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

yeah I have been on the aptch form of clonidine too.. and I agrree that it works better then the pill.. but i had skin irritations and cannot continue with the patch.. and now use he pill form.. still works well.. but not as well as the patch!

hmm i have thought about it.. but am afraid to go offmy BB's!! for fear of how high my HR will get w/o them!

hi thaks guys! I'm still feeling ok!! YEAH!! the moving is going VERY slow! my brothr came by yesterday evening to help move stuff.. and we chitter chattered more then we moved things! thoughwe moved a few things But hopefully by next weekend at the altest i should be alll moved in!

i take clonidine.. and i find that it does help alot actually with stabilizing my HR.. still wokring on the BP's.. but yeah for me it helps... i take .1 in the am and 2 .1's before bed.. it also helps with adrenaline surges at night as well.. since i upped the dose they have settled down a bit..i take clonidine in conjunction with betaxolol 40mg a day..

hi folks I thought i would finally share some good news with you for a change!! I went for an Iv this morning/all day event... and when i got to the hospital i felt pretty bad.. i almost didnt make it ot the hospital b/c I was feeling that bad.. But i got hooked up and fell back to sleep.. my initial Bp was 94/61.. so not to terribly bad.. and before i went home they checked it again.. and my Bp went up to 117/78.p.75.. and i felt really good!! the nurse ddint wan to let me leave b/c she said that my face was really flushed.. and my eyes had that funny look that they et some times.. blood shot.. but I'm like I'm ok really.. a flushed face and blood shot eyes are ok for me.. i'll be fine.. she made me sit there a bit befor eshe would let me leave.. but I'm home now.. and I stiilll feel decent... I'm getting abit tired.. but I'm trying to enjoy the little bit of energy that i have! its such a beautiful day!! But I'm thanking god for giving me half a good day!! hopefully it will last into tomorrow or the weekend too that would be great! Asmileynot so dizzy happy girl!

You go girl!! go Julie! go Julie! go gogo go Julie!! WAHOO!! that is great news!!

hmm good question... does having an out of body expereince count as dreaming?? I dream that i pass out in my sleep.. but in the general spec of things.. I'm not real sure.. its possible

hi I notice that I tunr colors.. beet red-purple-some times purply -blue.. and that my hands especially-- get squishy(SP?????? ).. mean tht htey feel bigger (my fingers and hands and feet and legs).. and it i push on my finger or foot.. its feel squishy.. like there is alot of fluid chilling out beneath my skin... and they do hurt.. and it s a sign that i need to elevate my legs. I get alot of sweeling in my right foot and knee especially.. to where it is noticable to the eye.. not just me....

glad tath you are back on earth toodear!! hope you butt is feeling better!! YES enjoy yhte beautiful weather before it gets way to hot to enjoy it! and you have a horse too!! that is too coool!---laying in the grass is always fun.. did you stare at the clouds.. and think what the clouds reminded you of? i remember one time i was riding in the car.. and i was starring ou the window (iwas pre-teen i think) and anywhoo.. i was staring at the sky.. and it looked like the clouds where making stairs.. and the way that the sun was shinning thru the clouds it was perfect.. and it looked like the stair way to heaven.. I may sound slightly crazy saying that.. but that is what I though it looked like.. glad you are doing better dear!! BIG HUGS linda

I'm so sorry that you had ausch a cruddy expereince today.. that doc and his Nurse?? seriously need a couple swift kicks in the butt! with a good pair of pointy toe'd high healed shoes.. the point so you can kick them.. and the heel so you can stomp on there foot! It makes me feel so mad for you and others who have to go thru this all the time.. I agree.. if they cant be nice and compassionate.. then why the heck are the in the field of medicine? I notice that you mention titusville florida--my pcp is moving to this area of florida.. though i'm nut sure if she is working in a medical office.. or what i wil find out.. and let you know though.. she is great.. and great doc.. she has treated me for about 3 yrs now... I will find out wednesday if she is seeing patients.. I want to say that she is working w/ alzheiner patients I think.. but I'm not sure.. I promse to let you know either way..she is going to be missed fromme that is for sure!! hang in there dear!

good article-- thanks for posting it!!

I'm starting Lyrica tomorrow.. as my b/f is home most of the week.. and I will feel safer taking it knowing that somebody will be here with me in the event that i get an allergic reaction.. as i tend to have delayed allergic reactions sometimes.. then i have severe allergic reactions.. UGH So tomorrow I will start taking it.. and hopefully it will help me not hurt me!! I'm starting on alow dose.. 25 mg twice a day

Hi folks.. I was wathcing a thing on TV tonight where they were talking of a women who suffered like 7 years.. with a rapid weight gain-buffalo hump-symptoms of IBS.. and some other things.. well I got to thinking.. and I was like wow.. that sounds alot like mE! I have be tested many times for Chushing's disease my dr.g and dr. fouad. as well as various other docs.. b/c I look like cushing's patient would look.. all of my wieght in in my middle.. and my arms and legs are still skinny.. there arent fat like my mid section.. and I have a round face..excessive hair growth-- that i never had until I got severe with pots- it just that.. wathcing this tonight realy go me thinking.. I have a cyst or something gorwing on my pituitary gland an my pineal gland.. and I cant get a doc to really look into it.. its been pushed off to the side.. and I cant help but think that there is a strong connection there w/ the cyst (or waht ever they may be)...pots.. and all the wacky things going on with me.. the worse that my pots gets.. the more non exsistant my periods get-- the more weight i gain- and more hair grows.. and the bigger the hump on my neck gets.. and as a whole the worse i feel in general.. I have asked how can I be getting heavier when I cant eat for daysat time.. and when I do eat I eat like abird.. when I was 16 i was thin.. and i didnt have some of the things going on then that i have going on now.. I think that maybe I overwhelm doc sometimes with my WHY questions.. and frustrate them b/c they dont have an answer.. so do any of you folks have any knowledge of cushing's disease? and do you think that there is a link with pots?? I cant help but think that there is.. and if i could get a doc t really listen.. and really take a look at me.. i think its a key part in what is goin on with me.. I just cant let the thought exscape me that there is a connection with my pitutitary /pineal gland.. and pots.. and all the nedocrine things going on.. my cortisol levels actually the recent labs taken they came back low.. so I dont know!!

if you call MCO.. here is the toll free number 1-800-321-8383.. you can ask them to connect you to the Hilton.. which is in very close distance to the hospital.. and ask to reserve a room-- the have a hospital discount.. where you can get the room for about 59-64 dollars a night verses there usual $149 a night! I think that the beds at the hilton are super comfy.. as i always sleep really well on them.. there are nice and asoft!! so are the pilows! lol but yeah ask for the hospital discount.. and give them Dr. grubb's name... everything you are diong and that jenn suggested sounds good t me.. and yeah be prepared to wait a while to see grubb.. its worht the wait i think though.. have a safe trip!

POOH!!!!!!!!! i totally agrre with what you are saying.. while I mean no disrespect to the experts in the field.. they keep tellling me that they are missing something cruicial in my case.. but do not know what that something is.. it is frustrating to say the least..for myself as well as the docs.. POTS does effect virtually every organ system in my body.. yet treatments are hard to come by.. and a good doc is ever harder to find.. I have MRI's and EEG's that come back abnormal everytime.. yet they dont know what to mkae of them.. there for it gets left on the abck burner or completely forgotten about.. I too suffer from a severe and very debilitating form of what ever this is that is goin on.. I also am told that i'm not a "typical" pots patient.. that i expereince symptoms that are generally NOT seen as a whole in patients... and I am left to pick up the pieces so to speak.. and try and find the answers on my own.. like I dx'd myslef with pots even before the docs caught on to it.. thanks to this website.. and reading janets story.. I cried when i read it.. But anywasy pooh i atleast wanted you to know that i understand what you are saying... and wish that i had more to offer SO here are some HUGS

Hi--no there really is no family around to ask--- aside from my beother he is going to move some stuff for me on wednesday..my friedn abby came up for the day yesterday.. but she lives quite a distance away-- most of my friends live an hour or further away.. or completel out of state all together... I'll find a way to get it done though! I've waited to long for this apartment.... I'll let you know how it goes after i get moved...

WOW!!Melissa-you have so much going on!! yet you made it class.. my goodness you are a real trooper my dear!! I realy hope that they can get things straightened out for you!! and that you get back to baseline soon BIG HUGS!! dizz

hi-- Yup I got an IV on thursday.. and i crashed badly afterwards.. i started surging during my infusion.. and have felt badly since then.. or more badly I should say.. Ironically-- my Bp did go up it went from like 100/60 to 125/87... and I think it spiked.. as that is when I started to feel badly... and I dont think my body isused to my BP being "NORMAL"... its used to being between 60-100/43-60!! big difference.. weird thing is the IV's normally help so I dont know what the deal was thrusday.. I'm stumped!--I'm going in for an other IV on this coming thursday.. before the holiday weekend.... I also am moving this weekend--oh my! thanks for the suport ladies!

hmm-it deoends on what i ddi to cause the crash-- or if my body is freaking out over somehting.. I've been majorly crashed for about 4 yrs now.. severly crashed for one yr.. and am back to ebing nearl house bound... really trying to avoid a complete bed bound crash... thouigh my butt is permantly molded into the couch cushions.. hang in there dear!! BIG HUGS linda

my dear living with pots and still getting out of bed everyday IS AN ACCOMPLISHMENT!! Living with pots it is not for sissy's let me tell ya.. you are strong b/c of it.. even it you dont think you are.. as far as your GED.. you know what I get how you feel.. but honestly there are people in this world who if they got sick with pots or something else that they might have just given up and not even tried to get an GED or complete high school.. and that fact that you got and that you attempted college... that is a big STEP and accomplishment... college is not easy by any stretch of the imagineation... and it takes alot of work and consentration and dedication to get thru it.. now if you had to stop going b/c of pots.. then you had too.. but do not beat yourself up over just having GED or not being able to finish college.. b/c it takes more guts to try and fale or try and realize that you have to step back.. then it does to sit there and say I cant do this.. or why should I even bother... b/c alot of people do just give up.. and by the sounds of things.. you have not given up you have hit a road block an obsticle and you just need to find your way around it.. and I'm certain that you will.. SO my dear you are not a looser.. please do not think that way... I too was sick at 15. and for toher reason aside from just pots.. I was not able to finish high school.. But I consider to myself that I worked just as hard if not harder to get my GED.. b/c that test is no cake walk,, and you really have to be prepared for it.. i was hooked up with a tutor who cam e to my home and worked with my everysingle day.. until I was prepared.. and that was the best thing for me.. b/c realistically I couldn not have complete high school; had I had to go sit in a clas room for 6-7 hours a day.. and then deal with stairs and gym class.. they ddint dx me with pots till iwas 20.. so i would have had to do regardless.. i count it as an unseen blessing at the time.. that i didnt appreciate fully at the time.. maybe you can set your self a small goal everyday to make yourself feel better about your self and your life as a whole.. I know I just told a feloow memeber here that this is what I do for myself.. i set a small goal for my self everyday.. and everyday those goals are different and will depend on how I feel in the AM and how the day progresses.. if I am feeling really bad.. then I make the goal Ok I'm going to brish my teeth today.. even if it takes me a while to do.. and I'm going to at least changes my underwear and put on some deorodrant.. and smell good stuff... if I'm feeling better then I make different goals.. It doesnt matter how small-goofy or trivial these goals my seem to an outsider.. somebody who doesnt get it.. it onyl matters that you acooml;ished what you set out to do for that day.. and that you feel good about doing it.. and as you progress and hopefully get better. your daily goals will change and become bigger.. and more exciting!! O often say that pots is kinda like ging thru AA.. you've gotta take life second by seconds minute by minute some days.. and if that is how you can get thru a day.. then that is how you get thru the day.. BABY STEPS!!.. when god closes one door he opens another door.. even if it sint what you thought it would be!! hang in there dear.. and rememebr take baby steps!! make your goals realistic to how you are feeling on that particuklar day!! HUGS Linda

hi folks I'm whinning again! I'm wondring if a cold or something si brewing b/c I feel horrible.. since like mon-tuesday I have not been able to get up and out of bed.. and that sleepiness that I posted about earlier-- is unbelievably uh sleepiniess!!!!!!! I am having major nausea.. and have like totally lost my appatite... my vision si supper blury and unfocused.. you know the usuakl only times it by 1000!.. i am constantly feeling like I am moving and I'm not moving.. and I feel like a major blob of jello.. I am constantly feeling like I am going to meet the almighty himself.. as I just am really really struggling... i cant thing straight.. I'm reclined in my wheelchair right now. and it feels like ti is rocking back and forth like I'm going to tip over in it at any moment.. motion sickness is more like it.. any idea's of how to make it stop?? I've tried taking half my dose of BB's thinking that that might help with the OI stuff. and it doesnt.. it makes me feel worse..and sets off my tachycardia to get worse.. GRRRRRRRRRRR this potsy stuff is really starting to make me feel mad!!! helLLOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!! does it ever freaking stop!.. ugh the potsy headach i think has to be the worst of it all.. the pressure.. is crudsdy.. and it makes my neck and the upper part of my bod feel like its giong to just drop.. like I have nothing in me to support my body.. a very BLAH feeling girl