dizzygirl

Hi folks.. well just a quick run down yesterday tachycardia hit me full blast.. my resting HR is running about 204-210...and any movement no matter how small it may be.. sets it off even more.. and it goes higher.. its really scary.. It is still running quite high today approx 160-180 resting rate.. and spike up to about 216 upon sitting up or standing or movement... has toltally wiped me right out.. Well i dragged myself to the Rehab place today for my PT evaluation for my wheelchair.. Well that went well.. my HR and BP explained themsleves... My question is... she checked my BP and then rechecked it.. and she said that my BP was 150/0======== meaning that she could not get a bottom reading... and I was so syncopal feeling tht I could barley hold my head up or see straight! and she would not tell me what my HR was.. all she said was it was quite high.. and I kinda figured that on my own.. with how I was feeling.. I felt like that for a good 20 minutes.. and then it cleared up some.. but my BP.. now that is what was weird to me How can you have a top number of 150/ over nothing? and the top # is high for me.. considerering that I runn anywhere from 60-122 top number.. Have any of you experienced this weird BP thing? On a cool note.. I got to test out that power wheelchair outside... ITwas AWeSOME!! I got to buzz around on it from the hospital up to the busstop.. which is about 3-4 city blocks... They PT lady and the Wheelcahir guy asked me how I was geting home and I told them I was taking the bus.. there like well how are you going to get from herre to there.. I said walk.. The lady (darned if I can remeber her name!) she is like OMG! No you can not walk down there not with how you HR and BP is.. so the wheelchair guy said well why dont you give that wheelcahir a test drive to the bus stop and I will meet you there.. So I did.. And I didnt feel self conscious or weird buzzing down the sidewalk.. like I thought I would.. I felt so very relieved to not have had to walk all that way.. had I had to of walked down to the bus stop I would have hit the pavement in no time flat.. and the HR of mine my lord.. with the heat.. YUCKY! But anyways it was really cool.. and it handles good on the curbs and road and sidewalk..I got to play around with the speed too..(LOL>> HAHAHAHAHA!) Dale Earnhart Jr.eat my dust! But anyways they said now that it should take about 1 month for medicaid and medicare to do there thing.. so folks I gives me great relief knowing that the ball is movig on things.. I just feel that even though my health is in the crapper right now, that hope is waiting there is the horizon..w/ the wheelchair.. upcoming app. w/ Dr. grubb and still waiting for a apartment to open up.. but I feel hopefull!! Love ya guys!

hey iget the sweling my my legs/feet/hands..I fins that if I prop them up that it helps the swelling alittle bit..

faithinspires... reading your post truly put tears in my eyes...you have lost alot.. but yet on the other hands you have you beautiful children.. standupsit down...WOW..you never really here from men who have dysautonomia.. I am sorry that you are sick.. but you have been blessed with a wonderful wife who is standing beside you.. no questions asked.. she is there to help you and love.. because she wants to.. and I'm sure that if the roles were reversed.. that you would do the same for her no questions asked.. please feel free to vent here anytime you want.. we are not here to judge.. but to support encourage and understand in a way that only WE that are afflicted with POTS can understand.. god bless you

OMG!! HAHAHAHAHA!! you guys are way to funny!!!!!!! what a great think to wake up to!! I love em"!! keep them coming...

Hi.. I too have alot of "morning sickness"... some times it is only mild... and I can tolerate it.. other times it is severe.. and I dont dare move for fear of throwing up.. WHen it is severe nothing helps it... but when it is mild or moderate compasine (sp) helps... uh.. I normally use quite a bit of that pepto bismol stuff.. I sometimes get relief from that those things... I get my" morning sickness"...all through out the day.. Oh boy!!

LOL.. I am glad to see that I am not the only one who carries a phone to the bathroom!! I normally keep the cordless and or cell phone (or both) in the bathroom with me.. I have gotten to were I do not take showers during the day anymore unless I absolutely have to..In april I had a very bad syncope spell while tkaing a shower and fell backwards and smacked my hip but good.. OUCHIES!! SO I am resigned to the fact that i take shower every couple of days in the middle of the night... and heaven forbid I have to us a blow dryer... i cant stand those heated contraptions!!! thay make me sick and I do mean LIterally!!!

Boy this is kinda depressing!! my cardio doc who first diagnosed me with pots.. told me that you dont really see alot of women over the age of 50 w/pots.. I think maybe he was trying to cheer me up???...

Hi Kimberely.. Welcome to the forum!! Um I have alot of problmes with loosing my sight..I call it a blackout.. and for me they seems to go in cycles where I will "black out" repeatedly for days and weeks at atime.. then I will not have any blackouts for a short time.. then they start up again.. Um..I havent as of yet found anything to stop or control them.. it can be kinda scary sometimes.. as they tend to occur with out warning at times... and make unctiong and day to day living a challenge... not tomention all the other things that go on... I was told a few times that my blackouts.. (loss of sight) can be a type of migraine... have you had an thurough eye exam by a optamologist? and you should have the pressure in your eyes checked too.. technology is really neat in regards to the eye.. a few yrs back before I was diagnosed with pots... I went to an eye doc.. and he told me that I have the most interesting eyeball that he has ever seen!! (LOL) he used this thing and took a picutre of the inside of my eye.. and it showed that my retina is split.. and that it is only hangin on to the fluid retina/ and such by a thread!! amazing stuff.. well anyways.. have you been checked out by a doc who is well versed in pots?? who can order test and keep an eye on your sight probs?? I am sure that you will find great support and reassurance here on the forum.. welcome! Linda

WOW that is great that you got in to the cleveland clinic.. to be seen.. I really hope tha tthey can help you and offer you some kind of treatment to help you feel better.. Its kind of bitter sweet finding out that you have pots.. and then finding it hard to find a good doc to treat you.. and then the process of having to find that right treatment combo that works for you.. I know what you mean about the TTT (til table test) I have had 4 of them done.. and the one that I had done in october 2004.. was the worst of all 4.. I got so sick allmost instantly when they stood me up..I came very close to passing out.. but did not loose total consciousness.. I wish you well and hope that you get some answers and help at the cleveland clinic!!

thanks lizzy!

Hi.. at first we though that I had a stomach virus.. this started In july.. w/ the severe tummy pain.. and vomitting..and it clears up for a few days then flares up for weeks. My doc thinks that part of its is pots related which I agree with.. but we also think that there is something going on in there that we just havent figured out yet..

I forgot to mention that the wheelchair guy came out to the house thursday morning and he brought an electric wheelchair with him.. and di some paperwork and took measurements..and let me play around with the wheelchair which i though was cool..it moves really nice and is easy to operate.. and it sha different speeds.. I'm lik watch out!! I will have this baby at full speed in no time! I'm like during that short month that I actually was learning how to drive.. I had a real lead foot!.. he laughed.. well he said that he was hoping to get me an appointment for an eval for PT by like nov... and that he was going to try and get me in sooner.. and then he will be able to send the paper work into the insurance company's and that i should hear something in about 30-60 days.. that kinda bummed me out.. I thinking oh great! Well god must truly be working miracles for me.. because the guy.. steve called me back bright and early friday morning.. and sai guess what Linda! i got you an emergency app w/pt for wednesday.. and I am going to push the paperwork for you and hopefully we will have you a wheelchair with in 2 weeks!! I was like OMG!! thank you! and I started to cry..(big surprise!huh?) Such a feeling of relief.. Now i am hoping that there are no SURPIRSIES in store for me with pt and stuff.. But I thought that I would share some good news with you all..

Hi all... (((BIG SIGH!!))) Oh K guys I am feeling extremely emotion ... all I seem to do is cry..over everything!! Geez.. I normally have a much tighter crip on my emotions.. (HAHA! maybe thats my problem!) Any way.. part of my weepiness is due to my POTS acting up so badly.. I am really trying not to feel sorry for myself or to throw myself a pity party.. but I can see and feel myself deteriorating.. and rapidly too.. and I am so very frustrated at some of these darn RUDE docs and nurses.. (BOY!! OH BOY!!! I just want to slap them! Well anyways stareting alst week.. I had some real issues with pain.. and nausea and vomitting.. migraines and what not.. so I broke down and went to the ER.. whcih actually wasnt a bad experience.. they helped in a timely manner.. and I started to feel GOOD!! can you believe it.. I can say I have pots and I felt good for a change in the sam esentence!!! Well last friday they gave my meds for the nausea and vommitting/ and for the pain + a nice wonderful bag Of IV saline! YEAH!! and I almost imeediately started to feel good.. and I knew I was dehydrated.. because as quickly as they pushed that bad of fluid through me I didnt pee at all! Well anyways.. I came home and got some much needed sleep....and slept from about 7pm to about 4am.. and BOY did I feel fab when I woke up..Last Saturday was the best day I have had in such a long time .. since about the end of April... well I just felt so blessed to finally have a functional day with not a whole lot of pain.. and best of all not severe pots symptoms! I actually was able to cook!! and do the laundry that was stacking up a mile high in my basement!! Wellat about 11pm that night I started getting really icky feeling..)dizziness..nd stuff) but the insomnia monster struck and I havent been able to sleep much at all.. and I was having like adrenaline rushes.. and feeling very jittery.. I do not remeber sunday or monday.. I remeber tuesday though.. the tummy pain has returned.. along with the vomitting.. and diarrhea..I was not able to eat or drink like nothing till friday night.. and then that wasnt much to rave about...and made m tummy hurt like #*&%!! Wednesday night I tried to take a shower.. and I got so sick in the shower.. I started puking (so sorry to be graphic!) and literally had to crawl out of the shower.. and laid down.. but again couldnt sleep a wink. and was up allnight throwing up.. and with severe tummy pain.. you know the kind of pain that you get in your tummy that makes you want to puke.. and gives you the chills.. and shakes?? I caleed the docs thursday and talked to the phone nurse.. and she was so rude to me.. I was telling her that I really need dr. T to please call something in for the tummy... and for insomnia to help me sleep.. and she is like.. Well is there a chance that you could be pregnant... I'm like no not really...and she is like well if you are pregnant that could be causing you to feel the way you are feeling.. I said no believe I am not pregnant.. well to make a very long story short.. she was just so rude and confrontational.. I was in tears my the time I hung up the phone.. I just cried and cried.. I feel like I have no where to turn for help.. well I crawled back in bed and literally cried my self to sleep...(i know pathedic right!) well after not being able to sleep for days.. I fell alseep and slept a good 9 hours straight.. wow that was great! Well the doc never called me back.. so I called them friday.. and the young lady that I normally deal with took my call..(the nice one!) I'm like you know I called yesterday and nobdy ever called me back.. which I found strnage.. becasue dr.t is very good about getting things done for me asap.. she said well there is no record that you called yesterday.. there is no note in here from that nurse (little witch).. and dr.t has allready left for the day she left early.. So I left yet another message with them.. this time I know it will get to the doc.. and I will go see the doc Monday afternoon.. and I will voice my uh.. concerns about this rude witchy nurse...from thursday.. Well to summ things up..they said go to the ER.. you really cannot get dehydrated. I'm like too late I'm there.. well I no sooner stood up to hang the phone up.. and I passed out..my god it has to be one of the worst syncope spells that i have had..I know that I went totally unconscious.. for how long I'm not real sure.. but i remeber being there on the floor.. and I was awake but i couldnt move and I couldnt open my eyes.. I could hear the radio playing.. and I could hear the cat meowing in my face.. but i cuoldnt open my eyes.. and my arms and legs felt so weird.. I dont even know how to describe it.. like electricity was running through them,, and they were so heavy and limp/rubbery feeling.. it took afew minutes to ragain my wits about me.. I dint move (like I had a choice) till that weird feeling passed in my legs and arms..and I sat up and started to cry again.. just praying to god what do I do.. where do i turn for help.. so I sat up in the kitchen chair.. and i spotten Dr. grubb's number. and I calle dhis office.. and spoke with a nurse there.. and they said that they wanted me to come in asap.. and I told them that i couldnt.. because I live a distance away.. but have an app. coming up on the 6th w/dr.g.. she said Oh good.. so in the mean time.. she was going to pass along the info to Dr.g's NP and have her call me back.. and discuss what i can do in the meantime while I wait to come to toledo....SO I am waiting for that call back from there.. and hopefully thay will be able to recommend something to help me till I can get there.. and have a real heart to heart with Dr. grubb.. I feel bad for dr. Grubb because I am going to tell himabout it all.. LOL I am just purely exhausted and feel so crummy..and cranky and weepy.. ok folks thanks so much for reading.. and a apologize for the length of my post.. and I apologize for all the typo's too!!

JESUS!! Oh my morgan.. I am so sorry for how you were treated in that hospital and by those doctors.. it is just so wrong!! I wish that I had words of wisdom for you.. I just wanted to let you know that I am rooting for you.. and sending prayers and hugs and all that mushy stuff your way!! Oh and I want to second Nina's commenet on committing some felony's...I'll help!! please take care...

pooh.. its funny that you have brought up showering.... I for one... who used to take multiple showers a day.. have gotten to the point to where I am lucky if I get a shower every couple of days!! I too have a shower seat.. but my lord I seem to get so sick in the shower...(nausea.. vomitting and yes.syncope) ..It tires me out so quickly.. especially the having to raise your arms to wash your hair.. and heaven forbid that you want to shave the furr off your legs!!.. zapps the energy right out of me!!! I dont have the energy to do simple tasks more and more lately!! But I wanted to comment on your shower thing... So NO you are not alone.. pooh!

HI.. well I have had mostly good experiences with having an IV saline.. Generally speaking what works for me the best is if they give me a bag of saline.. opened so that it is running kinda fast.. and also Oxygen.. between the 2..I will start to feel allright... the O2.. really helps with the floaters that I get.. and all those visual disturbances too.. and dizzy potsy headed feeling that I generally have all the time.. The IV generally helps me function from a few hours at atime to about 1 full day... and I generally feel half way human.. which is great!! I HIGHLY recommned IV's!! So I think that if you can find doc to help you with IV's it would be a great thing to do to help combat dehydration.. and other problmes.. good luck

ernie.. thank you so much for giving us an update on Morgan..I have been thinking of her and wondering how she was doing.. I am deeply saddened by how she is being treated.. it is just so wrong!! please send her best wishes from me.. and some hugs too

OMG!! you guys gave me such a laugh!!! this is too funny.. and yes if we didnt laugh we would cry.. It would probably be the first noted NON alcoholic party ever thrown for adults!!.. but nobody would know that we WERENT drunk... with all that stumbling and bumping and bouncing off the walls or floor.. HAHAHAHA!

Yeah! that is wonderful news Nina!!

Hi folks.. well I went to the doc today...follow up from my ER visit friday.. The next step for us to take is to have MRI's done from my hips down to my feet..today when I was there...my knee was swollen..so she was able to see that hey there is something going on there!! In may I had ex-rays done of my knees to see if there was arthritis there.. and there was not.. which is good.. but still leaves the lingering question of what on earth is causing the pain! Well I have been on virtually every anti inflammatory pill since I was 12 yrs.. old.. and havent had alot of success with them.. the only thing that works and works well..is Toradol.. MY MYMY that is a wonderfull pill!! through an IV it knock a good majority of the pain out of me in short order.. I asked the doc for toradol to take at home on an as needed basis. and she said that toradol can only be used for 5 days at atime.. then has to be stopped.. which ***** big time! its is the only thing that helps.. So she gave me some Mobic to try and wants me to get some glucosamine chondroiten w/MSM.. to also take and see how that works... and I have to start PT/ and water therapy again.. and see if we cant calm down the pain and stuff.. so I feel that my doc is trying to really help me.. she is great!! and thuroughly try and figure out the missing link.. of my pain... I hope that she has some luck... this pain and stuff started when I was 12 yrs.old.. and my mom would take me to the ER.. and doc.. and they just said that it was al in my head.. and that it was "growing pains".. yeah like growing pains is going to give you a fever and make your joints swell up.. and cause severe PAIN!! HELLO!!! I dont think SO!! SO I am wondering if any of you have had any luck with these anti-inflammatory meds.. thanks guys! Linda

Hi Nina I am so sorry that you are feeling so badly...astma attacks are scary..I am glad that you are able to get into see the doc so quickly that is wonderful.. I really hope that they can offer you some much needed relief.. HUGS to you MM!! Linda

I am so sorry that you are feeling so poorly.. and that you doc was so insensitive.. I hope that you start feeling better soon, hang in there!! we are here for you!!

Oh wow Nina.. you really are havinga rough time!! I realy hope that you feel better soon! Linda

Melissa.. No I DO NOT think that you are over-reacting.. I feel that "maybe" at first she "might" have been thinking that she could help you.. but even still she was out of line.. I dont think that it is right for somebody who has no knowledge of our POtsy world.. or any illness for that matter.. to say well I know what will cure you.. its just wrong.. and it is insulting... and as for the rest of her BS.. my lord.. I would like for all those whose.. judge us and DISCRIMINATE against us.. to walk a week in our shoes..at some of the worst times with dysautonomia.. so that they would really know and understand how much this effects everything that we should not have to think about.. because well it automatic.. but we are very well aware of our autonomic systems.. how could we not bee.. Now I am not wishing this pots/dysautonomia on anybody.. and I hope that it didnt come across that way.. I wouldnt wish this on my worst enemy.. I just would like those Bullhead ignorant people to understand.. Anyways.. I apologize as I just went off on a tangent!! I just feel angry for you! But yes I think that you should have something on record.. just incase.. you never know.. Ulitimately the choice is yours.. But you are an intelligent person.. and you seem to be very level headed.. I think that whatever you decide to do will be what is best for you.. and best for you to ge tthrough the remainder of the semester..with this professor.. You know your body and how it functions and doesnt function.. and if you need to ask for a little extra time or consideration.. you should get it no questions asked.. they are aware of your situation.. So anyways Melissa I just wanted to offer my support.. let us know what you decide.. good luck Linda

Hi guys.. thank you for your wonderful support!! No they did no blood work.. or testing..they just looked back at my records from june when I was admitted there.. and hooked me up!! My butt is kinda dragging today... but i do feel somewhat better today then I did yesterday.. I am keeping a constant stream of extra strength tylenol going every 4-6 hours..I can move my neck better.. and I look better today then I did yesterday.. thats a plus!! I too am surprised at how quickly the hospital staff moved yesterday.. and that they were actually NICE!! what a change.. cant say that I have even encountered Nice ER staff.. till now.. well thanks again! BIG BEAR HUGS to you all! Linda