dizzygirl

Steph.. good articles... it kinda makes me feel sad to see kids so young have pots.. Imena my lord they are kids.. they should be living a FuLL kid life!! I know I often feel like I have been "robbed of anormal" life.. I have had pots since forever.. and I can remeber being 13- and 11- and 15.. and knowing something wasnt right with me.. and really knowing that i didnt feel good.. and nearly 9 yrs later i got diagnosed with pots.. and add another 3 yrs after dianosis... my god a good 12 yrs living like this!! and I can remerb thimes as alittle girl I mean like 4 yrs old.. where I had symptoms of pots... Oh well.. at least I have all of you!! and a great dr.. Dr. grubb! god bless him!! sorry kinda went off on a mini vent there...

Dayna.. I'm late here.. but just wanted to say that i hope that you feel better soon!! sending some HUGs your way.. Linda

YEAH!! tracy i am so happy for you!!! i'm glad that things are starting to look up for you! and that you are feeling better.. it great to hear one of our fellow potsy pals are feeling good!! its encouraging!! HUGS to ya girl! Linda

Hi! yeah that sounds like blood pooling.. I get blood pooling in my arms and legs/feet.. mine turn dark purple.. and mollted red/purple looking (hands) typically what is happening is like lets say you stand up.. automatically all the blood and fluid/plasma in your body falls to your feet so to speak.. and in people with pots (or some other circulation problems).. the blood doesnt pool correctly in your legs.. meaning that your veins may not contract and dilated correctly.. and heat from ashower will casue your blood vessles to dilate.. and not be able to push the blood back up tot he upper half of your body quickly or properly... I know that I get pooling while I am sitting too.. and i also get pooling in my hands more so when it is cold..my hands dont get just alitle cold.. they like get to the point to where they hurt and burn from the cold.. even with heavy gloves on... I have had pooling in legs especially since as far back as i can remeber.. I have these "dots" on my legs that seem to be a gentic things b/c my moms entire side of the family.. the women.. all have "dots" that turn purple.. can we say POTS!! anways compression hose can help with blood pooling b/c they put pressure so to speak on the ankles and feet.. and force blood to flow up the legs to the brain...waist high ones are better then thigh high I think.. atleast personally for me they are....less fuss too.. Ok I am rambling a bit now... sorry! dizz

GEEZ!!!!!!!!! what a freggin' jerk! How dare he tell her that maybe she shouldnt be trying to go to a 4 yr. college!! Oh that is just wrong.... Just b/c a disability is involved doesnt mean that "we" dont have the right to attend to school/college!!.. Nobody has the right to incinuate or say or try to pursuade you to get an education.. its your own god given right and choice!! Just wanted to add my 2cents on the subject.. hope that professor check a reality check like yesterday!

hey thanks guys!! I am going to check out that website and doa googla search... and hope that my doc has some samples!!

Carmen .. sending hugs and prayers your way.. I hope that things work out for you.. please know that we are here for you always! HUGs Linda

hey all.. I'm alittle peeved off tonight.. as I called a refill on my med Lunesta.. and went to pick it up and the pharmacy said your insurance wont cover Lunesta... I'm like what?? they have been covering it.. she said its b/c of all the medicaid changes.. that it is no longer covered under medicaid.. I was like OMG!! for thos eof you who dont allready know this.. I have horrible insomnia... and even on Lunesta i dont sleep real well.. but more then if I werent on anything at all... I called the docs office to see if they could put in one of thsoe pre-authorization things.. and they called back and gave me the low down on the meds tht were covered... and its all stuff that I cannot take.. i cant take like the heavy duty sleepy meds b/c i cant handle them or I'm allergic to them! So Lunesta is like the only thing that really helps even if it is only a littel bit... and it doesnt have bad side effects for me.. and doesnt leave me feeling like a freeakin' zombi the next day... So it is a safe Med for me.. I'm like so annoyed .. I am down to my last Lunesta.. AAAAAAAAAAHHHHHHHHHH!!!!! I go see my PCP tomorrow so I am hoping that she can figure something out.. Do any of you know of a company that you can order Lunesta out of that is reputable and not going to cost you a fortune??? I know some of my potsy pals order the Midodrine out of Cananda b/c it is cheaper.. and thoughts??? thanks! dizz

Hi folks... just wanted to pop in and let you all know that I survived my endoscopy with no serious problems this morning.. thank god!! I had issues with breathing.. but they quickly fixed that.. my pulse OX dropped low into the 80's... it was kinda weird.... i could feel myself breathing irriatic.. and it was like I was hearing thru a tunnel the nurse talking to me.. I was pretty doped up at the time.. gotta love demerol! but after some O2 and the drugs started to wear off.. I was ok.. the doc decided b/c of my risk of BP drops to only give me half the standard dose of Demerol.. whcih was 50mg instead of 100mg.. they give it to me and she goes do you feel it yet? I'm like "yeah i feel all warm and fuzzzy" she laughed and said that is good.. and Boom! I was out. and wake up in the recovery room.. I dont remmerb any of it... thank god!! all i vaguely remerb is my stomach hurting.. and trying to move away from the tube and doc... My BP and HR BEHAVED itself today.. I was truly surprised.... My BP and Hr rate remained stable through out.. the lowest it got was like 104/57.. I thought that was pretty good considering the problems I was ahving last week... Teh dco came in and talked to me before I left to come home.. he said that he did some biopsies of my stomach.. and beginning of the small intestine.. that things look pretty inflammed in there... but he isnt going to specualte of the exact problem until after i have the other scope done... he think it will prove to be intersting... ... so rigth now I dont really have any answers as to what the heck is going on with my guts.. all i know is I hope that they hurry up and figure it out... and I hope that it isnt all my POTS causing such GI troubles.. b/c that will really upset me... not that I want anything serious to be wrong.. but I would like to have something treatable for a change! The nursing staff at the hospital was fantastic...!! one I wasnt so dopey several nurses came in and talked to me b/c they wanted to know what POTS was.. that they have never heard of it before.. SO i gave them a quick run down of POTS... and there like whats is the d-- words you called POTS?? I'm Like DYSAUTONOMIA.. I heard them talking in at thenurses station about DYSAUTONOMIA.. there like "wow she really knows her stuff... go talk to her about (to a fellow staff memeber) it she tell you all about it.." I had to chcuckle at that...and felt good to that I was able to "educate some folks on our condition"... I came home and slept the day away.. throat is alittle scratchy feeling.. but otherwise good.. so I have to call next week and get the results of the biopsies.. and go from there... hugs to you guys...

ME AGAIN!! Hi.. one more thing.. I am going in for an endoscopy in the morning.. i am hoping that they will be able to find a root cause for these terrible tummy aches i get.. and all the vomitting too.. I would love to be able to eat my favorite veggies again!! or any food for that matter!! MMM ice cream! SOO.. that will be my day tomorrow.. OH JOY!!!!!!! will let you know what the verdict is tomorrow....

Hey folks... thought I'd pop in real quick and let you all know that I made it to the neuro today... it was an interesting visit.. I learned alot actually... I am going to be keepiing a "headache and food diary" from now till I go back.. to see if we cant find a trigger for my migraines She said that i have a severe case of POTS.. and that that is half my problem... b/c the pots is messing with my body so much.. and that a combo of things are going on BP- tachy. lack of sleep.. and so on.. that she was also concerned about giving me the med Topamax..b/c I am nearly blind in my left eye.. and had I not have perfect vision in my right eye that I would be considered "legally blind".. she is concerned about the side effect of developing glucoma... even though it is rare.. she still had some thoughts on that... I also have to try and eat alittle bit better..b/c I am noramlly only able to get one small meal down a day.. if I am lucky... I have real problems with food.. (and believe me I LOVE to EAT!!).. I have alot of vomitting and nausea.. and pain/diarrhea.... and most of the time when i can eat and feel hungry.. I only eat a few bites.. and am full like I pounded down the food all day long.. she also had concerns abuot the fact taht i dont realy eat .. and have had a rapid weight gain in the past 6-9 months.. (nearly 37 pounds!) So I am suppose to try the topamax.. and gradually increase the doseage till I reach 100mg a day.. and then she increased my Imitrex to 100mg as needed... I did a search on topamax.. and see there are alot of mixed "reactions" to topamax.. when she said I want to put you on topamax.. I though OH NO DOPAMAX!! she must have seen a strnge look on my face.. b/c she told me all about the side effects.. and told me to try it for a week and see how i do on the med and with the side effects.. and If i cant handle the med then to call her.. SO I kinda feel rest assured knowing that I have a good neuro to call on if I need to.. who has a grasp on POTS.. and relizes that it is an "ISSUE" my head does feel better today thank god!! 10 dasy with a migraine was awefull!! Now it is only a mild stabbing apin in my head and my eye..

what is raynaud's?? i have seen it mentioned many times here on the forum... is it an additional casue of the purple extremities?? mine get pretty purple... and cold... and my hands are often feeling like they are on fire... and when i wake up I get alot of ah..weaknessa dn heaviness in my left hadns and arms especially..not quite a sleept feeling

Zoe.. I am crying with you right now and hugging you at the same time.. I iwsh that i were there to give you a live and in person hug..but am sending lots of virtual cyber HUGS your way!! I believe that you made the best possible decision that could be made consdiering the outcome of things...please dont be harsh with yourself...there is no timeline on grief my dear.. dont let anybody tell you "you should be over it".. you grieve in your own way and at your own pace.. and know that we are here for you thru the long haul... please take care... hugs to you! Linda

I get alot of pooling in my legs and feet too.. as well as my hands and arms... I have had a QSART test and the sweating things in my legsa re normal.. and an EMG in my legs are normal too.. the only thing funky on my QSART test was the tilt part of the test.. bp took a nose dive.. and HR went up...indicating a messed up ANS system which we allready knew I had .. soo.... I have had pooling in my legs for as long as I can remerber.. I would ask the doc about it when i was 17ish.. and younger. andthey'd say 'OH your just cold" Ok.. whatever!! I dont feel cold!!

Roselover--- that is really sweet!!

WAHOO!!! GO NINA!! DId you hear all of us cheering you on this morning??? I'm so proud of you Nina....your an inspiration to us all... take the time that you need to recoop.. and know that we all love ya !! Hugs Linda

hey that is great that you had a good day.. and to answer your question.. yeah I think its normal w/pots to get full very quickly.. Ido.. only after eating a few bites of food...

hmmm.. this is a good topic.. and good question too... In my case my pots has gotten progressivley worse... I have had pots my entire life... but as a teenager I had some what of a functional life.. I was able to complete high school by getting a GED and having a tutor who came to my home everyday.. so it was one on one... and I was able to work.. even though I went through spurts taht I missed aot of work.... so I had good spells and not so good spells... over the last 3-4 yrs since I got really sick i've been more bad then good.. and at some points was able to go to college.. the stop and go back.. repeated this cycle for over 1yr 1/2..but i have hit a road block so to speak... In my case my docs feel that there is something more going on with me other then pots.. and they at this point do not know what that something is.. so maybe if they could fiugre out that "something" my pots wouldnt be so terribly bad.. so for me pots has become progressive... but i hold tight on to my faith and hope... Pots and the severity and level of functioning is different for everybody.. as has been allready mentioned.. alot of people with pots do improve with treatment.. and some others for reason probably unknow at this point dont... good luck to ya in your testing... Linda

Persephone--- girlt aht si so VERY COOL!!... I'm so happy that you had such an awesome and uplifting experience..

wareagle.. thanks for he info about a medaport.. that is really interesting.. I have never heard of it before.. a disk huh?? Hmm.. definalty worth looking into!! tha would really help if I could get routine Fluids pumped into me.. I am at a constant level of dehydration all the time.. no matter how much I drink... gotta love this potsy crappola! thanks again for he tip... i'll let you know if it fly's with the docs...

Carmen you are too funny!! pooh.. that would be neat to hear if they are working on a Chicken soup for the chronically ill... I know i've read some of the Soup books and I love them! I'm sure that we could come up with some GOOOD storeis for this book!! Shoot we all should pitch in a story or two and do our own pots wrold book!!

Oh boy Julie... dealing with family is hard.... I know for me personally i often feel like I am trying to beat my heada gainst a brick wall... just in trying to defend myself in regards to my pots... I unfortunalty have not found a way to get through to idiotic family memebrs.. .. so I ultimatley stopped giving an explainiation to things... I feel that I have tried many many times to set the record straight w/ family as well asl freinds and medical providers.. and people are just ignorant Julie.. .. even the ones you love.... I have offered medical info to read.. asked "family" and "freinds" to acompany me to procedures and guru's in the potsy world... there sometmes comes a point where you can only say and do so much.. and then you need to let that person alone.. as it gets to take so much more of precious energy to "explain" and "defend" yourself and your illness (s).. I know that it has to hurt to hear things like you hear from people you would think that will be there for you.. as you would be there for them if they were in your shoe's.... there is no way to ease that kind of emotional pain.. You know how debilitating POts and your spinal issues are for you... just remerb that... and that you do have support through you Hubby... and you have us here on the forum.. we get it!! I Know that you are not a lazy person Julie.. please dont let your family make you feel that way... you were a great help to me last week while I was in town.. and I am greatful for that!! hang in there Julie....Its great that you still try and help your family and do for others. considering things... that alone makes you a better person.. a bigger person so to speak.. and lightyears ahead of the "ignorant people of the world"" who are truly blessed to be touched by a person kindness...when they dont realy deserve it... HUGS to ya Julie Linda

thanks gals!! I'm really struggling today.. with the same stuff ... my tolerance for sitting up and standing is way low... and I'm about to go nuts from the dizzyness... I really hope that this "new" neuro can help me.. and atleast get a handle on my migraines... will let you know how it goes!

Welcome shannon.. this is a great place for support!

Oh I love that idea!! it sounds like it'd be fun... wonder if we'd get any bites on the idea....