dizzygirl

good topic.. I can realte to alot of what everbody has said... for me I think that the good thing that came out of my illness.. is after living with it for 20+ yrs. I finally had a diagnosis.. found a doctor (dr. Borowski and dr. grubb) who recognized what was wrong me. So I finally had a name for some of the mystery things going on with me... so for me it was good to have a name.. something to call... and that some experts in the field have confirmed to the reat o the docs who treated me over the years that i was NOT CRAZY and that I DO NOT suffer from a Mental illness.. when in reality i suffer from a severe debilitating chronic illness.. and that it is REAL and that it is not all in my head.. So I hve that comfort in knowing I'm not nuts.. and that I was validated.. VALIDATION Um since I was sick my whole life.. you know I allready had compasion and empathy for persons w/ disabilities.. or who were different... and for people who arent sick as well.. thsi past week after having my visit w/bev.. I was disappointed b/c they cant tell me why I'm getting so bad.. and not better.. or explain the paralysis that is absolutely terrifying. not to mention everything else.. I want answers more then anything.. even if there isnt a nything that i can do about.. I'd like to know.. like imentioned in another post.we dont know why I or others are so bad off with this potsy business.. only that we are.. and I believe that in my case (as well as a few others on the board) that there is something more then pots involved... just that there is so little understood right now.. generally speaking on alot of illness's...(I mean no disrespect to the researcher and docs taht devote there lives /careeers to find a cure or answer)...only that so little is actuall know... Like why do ernie-morgan and i paralysis..why do I have out of body experiences when this happens? Why does belinda's nose throbb all the time?? why do some people get better while other get worse/ we dont know!! However.. I have found that thru the past few yrs.. especially this past year.. that my faith has grown stronger.. and that I have more inner peace with in myself..and I do not fear dying..as its going to ahppen to everybody... I dont know if I have "grown" b/c of my illness or just my own journey of discovery..or healing process of blows that life has dealt me... But I have and I'm certain that it played a key into things.. so here a re my thoughts on things..nothing miraculous.. other then i'm am calmer and more at peace with in my self.. which that is in and of itself all that I need...for me it is a blessing.. w/ o it right now i think i would be a wreck considering things that are happening to me... and the lack of answer as to why...

YIPPEE to Amy and Morgan! I know I had alot of mixed feelings too when I fisrt got my power chair.. relief-fear.. having to accept that i really did indeed need it.. you know the whole nutshell.. I have not been able to use it out side of the house yet--but will be soon.. I'm happy for you both!! happy wheeling!! I think that we need to invent or design some potsy bumper sticker or little license plates for these things!..lol..

thanks gals!! I'm looking forward to this.. Jacquie~~lol I will have internet!!! just not right away once I move totally out it might be afew weeks before I get up and running with phone and internet and things!! :)

Hmm--yeah kidney failure would make sense for the whole filtering process.. but my kidneys work good! one thing in my body that hasnt gone haywire!... Bev wrote out my order that i recieve no more then i liter in a 24 hour period.. so I really think it'd be ok!!

i dont know my thought was well.. when they admitt us to the hospital.. they run a constant stream of iv fluid even if you are there 2-3-4-5 days.. so how can that hurt verse.. one lonely liter a week or as needed? I guess I dont understand either.. b/c there are some who say we should drink a gallon of fluid a day.. and other that say a few liters.. I dont know !! i'm confused!! but the thought of over hydration.. hmm ya got me!.. my friend denise.. she has pots.. she runs 2 liters of Iv fluid thru her a day on top of what she drinks.. I think my doc is just nervous... i still dont see how a liter once to twice a week is going to hurt..especially if I'm not able to keep fluids down...I cant wait to get the letter from grubb's office!! then maybe things wont be such a pain in the rear to get!!

I honestly do not know of what problems can be caused by over hydration.. only that my pcp said tht it an cause some electrolyte imbalances.. other then that i dont know what it can do.. I'[m at a loss.. maybe some of the others can shed some light on htis..as I am curious too as to what others have to say!! dizz

hi thanks! no my b/f wont be "living' with me.. but he works and lives close enough that if I'm having a bad time.. he come over...he owns the home that we live in now. and he was raised here and has lived nowhere else.. so I dont thinks it fair of me to aske him to give up the only home he has known to move into an apartment.. we have wracked our brains trying to find a solution so that I dont have to move.. but its impossible to convert the house.. or to add a ramp at either the front or back door.. so this is the next best thing.. and hopefully things will work out and surivive on the b/f end of things.. some friends have offered to come stay with me on the weeknds if i need them.. to help out.. my best friend abby.. is comeing up the weekend i get totally moved in to do the grocery shopping and help me un-pack and get organized.. she lives over an hour away.. god bless her!!.but she said that if need be she will stay the week.. till I'm settled..and then come every other weekend or when her hubby is away to help me out.. my mom has also offered some help..(she lives about as far as my friend abby!) and my b/f his nephews are going to help move the stuff in.. as I'm in no position to be lifting and hauling..carrying stuff.. god I can see a nasty faint trying to do that.. and besides my grandmom told me that i lift anything that she is going to come up from florida and kick my butt.. that I need to let the "men" do the heavy work... and that if she hears that I lifted anything I'm in trouble!! lol this coming from the grammie who had a paddle hanging up in her kitchen.. that was a pillow on a stick w/pink ribbon!!! LOL that said gramma's paddle!! hahahahaha.. i just remembered that! LOL.. goofy granny.. Oh yes I'm in the process of also setting up long term care..(aide help) once I move.. and the vision and blind assoication is going to come eval my apartment and see what kind of tweeks that they can make to make things easier for me....and we found a few other organization where i might be able to recieve help from.. so this is good!!

Hi folks! thought I'd let you know that I survived my toledo trip.. thanks to some feloow potsy pals!! .. I broke my trip up going out there.. and i think it saved me from a sever crash.. (though I crashed out but not a severly as i am famous for doing!).. so that was a tremendous help.. and life saver for me.. and I had some relaxing fun too.. as I always enjoy getting together w/ folks! But I had my appointment with Bev.. she is great! I have been talking to her for months on the phone.. and it was nice to put a face with the voice!! she came in and i was laying on the table.. and the brought me a blanket in.. so I was good and comfy! Lol... Bev anted to try me on procrit.. 9b/c i'm so sensitive to medications.. and that we havent tried this yet..)..so she was like yeah I think that we are going to try this.. and see if it helps you.. she told me that I had to find a hemotologist to follow me back home I' was like ok I'll do that.. so she went to go talk it over with dr. grubb.. and she came back in and she looked like her best friend had just died! I was like oh no! she said that she was sorry but that my medicaid will not pay for procrit... I was so upset.. I was trying to fight tears that wanted to run over..I was so disappointed so was bev.. .. so I talked to her about my primary insurance.. then i told her that I'd looked into the co-pays and stuff.. and that thtye wanted over $500 a month in co-pay for 4 injection!! I was floored at that amount of money!.. I was like Bev that would be allmost all of my SSDI check!!.. she was like yeah you cant swing that.. such a disappointment..but.. I wont stop till I find a way to atelast try this med..b/c i cant help but think .. what if this is the one med that might help me...I will always wonder if it would ahve helped.. so I'm going to call the medicaid office and soical service organizations-- anybody who will listen.. and see if there isnt some way that I can atleast try this to see if it would work.. appeal to the medicaid board or something.. how can people sleep at night ya know? knowing that they are robbing people blind of medication that might very well be life saving for them?? I dont understand this.. But any thoughts or suggestions on how i can battle with these insurance company or the higher ups..(like BUsh ) would be appreciated!! I talked with Bev about my paralysis spells.. and how often they are happening.. and all the crazy things that are going on.. my incredibly high heart rates.. BP all over the map.. and the million dollar question why am i not getting better? despite the numerous medical interventions that we have tried in the past 3 yrs...not to mention numerous docs other the them that i've gone to see.. ..she told me she doesnt know why..she goes you are very special..(i was thinking.. I dont want to be special!! lol).. that i am a pioneer in this stuff that is happening to me....that for wahtever the reason is..there is a reason why i have pots so badly.. and that there is a reason why i dont respond to treatment.. and that i'm paralsising and stuff.. and feel like there are bee's stinging me...UGH.. and the pain is unreal.. So I'm going to start Lyrica.. at the lowest dose possible.. adn she upped my clonidine.. they cant up my betaxolol..b/c I am allready on the highest dose that you can be on... i ddint know that.. i was like wow.. so why am i still getting these high tachy spells... b/c i'm special! lol..but no really. it is baffling.. they got the faxes of my heart moniotr recordings.. and she showed them to grubb.. and she comes back in and goes well there is one good thing.. that i'm not having dangerous arrythmia's.. i just beat incredibly fast.. Oh yes a good thing.. they gave me a standing order to get IV hydration as PRN when I need it so that maybe I wont have such a hard time getting it when I need it..both she and dr.g signed it.. and also theya re goin to write me a letter explaining waht dysautonomia is and how it afects me.. and that its real!! and that pots is pots dysautonomia not something to do with my ovaries! yes a dcotor actually ac=rgued with me one time that my pots was an ovary problem..not dysautonomia!! HELLO!! to all you men out there with pots.. did youknow that YOU had ovaries too!! LOL.. my god the ignorance I tell ya!! but yeah.. so I got home and am trying to set up Iv infusion.. and I found a home IV infusion thru the home health agency that I had last year.. theya re fanataastic.. well my insurance will not cover in home infusion!! but she told that there is a Infusion center right on the bayfront aht i can go to. and its much more comfortable setting all theway around.. then the ER.. and its only 3 blocks from my home that i'll be moving into!! so its is accessable!! now here is the problem.. my pcp wont work with the order b/c she is afraid of what will hapen to me if I get over hydrated. she does not want to be responsible for waht will happen to me if I'm over hydrated.. which I understand where she is coming from.. BUT.. t his is the only thing that helps me..!! my god the only thing that offers me any kind of relief!! not even sleep is a for sure relief..b/c i'm sysmpotmactic in my sleep aswell.. SOOOOO.. i tried reaching my local cardio guy.. and I hope to hear back from the come Monday.. and hope that they wiill work withthe order.. I would just call grubb's ofice and have them set i t up but they wont accept out of state orders there has to be a local guy on board... so pray that I can get things worked out pls!! Oh yes.. they are also sending a letter to my PCP requesting that i have a swallowing study done.. and an MRI from my head (skull) to my butt talbione area.. as I think its a key to some of my problems..been alot of trauma to the spine.. and I'm intersted to see waht this is going to show.. I fugred that i''ll get the MRI done.. then ship it off to the chiari institue or milwaulkie for futher evaluation.. so things are mvoing slowly fo rme.. and even though I dont have answers or a solution yet. I'm trying to keep my witts about me and my faith.. and keep a strong support system aruond me. and this fourm defiantely does that for me!.. But I made it home.. I had a rough time on the bus ride home.. but got home in one piece,, and had to really bad freaky spells during the trip..as I feared that I ight have.. and i havent crashed to badly... I'm extremely tired.. and have pretty much slept since I got home. and slept very well at that!! YEAH I lvoe my sleep!! me and the cat have been sacked on in bed snoozing! allrighty folks i'm signing off for now! dizz

Hi folks!! I thought that i would share some good news with you!!..after waiting for allmost ayear!! a handicapped accessable apartment has come available for me!!..WAHOO!! It will be avalable for me to move into in under 3 weeks.. they have to get in there and clean .. and they are replacing the carpeting..repainteing the walls (i think too) and replacing and fixing anything that meeds a fixing or replaced!!..these apartments are very nice.. it is centrally located right down town.. the hospital is 2 blocls down the street.. and you go one more block down the street on you are on the bay front.. its a beautiful sight looking out of the laundry room window..you can see lake erie.. and the lighthouse tower.. i love it! the apartment building is wheelchair accessable.. there are elevators..Um Oh yes there are emergency pull cords in each apartment located in the bathroom and the bedroom--(big plus there--!!!) so that if you need hlep that somebody would know and come and check on you.. then call 9-1-1.... um it s a secure building.. (another plus!) consdiering its downtown..though the nicer section of down.. a big university takes up alot of down town...but nobody came get into the building unless you buzz them in.. very cool!!.. there are 9 apartement on each floor.. and a laundry room on each floor... as well as trash shoots. and such.. its going to be great being centrally located.. for on a day or evening when I fell well I can get out.. and ride around on the bayfront and feed the ducks or something..(something I really like to do.. sit on the beach or the dock and feed the ducks.. i find it relaxing!! and watch the sun set! on a cool evening) I've always wanted to live near the water.. and this is cool b/c I thinkits as close as I am going to get to live on the water!! 3 block aint bad at all!! So I wanted to share my god news with my potsy family!! as I have ben waiting for this for some time now.. and things happen in there own time frame.. and my time has come !! HOORAY!!! I'm so very excited.. not only for the apartment being available for me.. but b/c this is a chance for me to gain abit of the indepenedance that i had back.. I've been a very independant person since I was 15.. and I'd grown accustom to getting things done on my own.. and it will be nice to slowly build back some stabilty.. and really gain that independnce and self -esteem back!! and major kudos here i'll be ale to use my wheelchair and that alone i think will give me some sence of life back..! So I am really looking forward to this...my mom -grnadma-and boyfriend are also very happy about this.. and they all have been supportive.. :)< a very happydizzygirl!!

well i think that there is a connection between ptsd and pots.. I have my own therories that i'd be willing to share with you via email or PM.. that i have talked with an other potsy pal with in the past.. for me personally.. I suffered severe physical (you name other trauma's) repeatedly from before birth (yes before birth - what i meanby before birth is my father beat my mom while she was pregnant with me.. and as a result i was born 3 1/2 months premature..) until i was 15 yrs old.. and I was liek i cant do this anymore.. and i split.. I had a traumatic event happen right after I got real bad w/ pots in 2002.. but i have recieved a great deal of therapy.. and i have a good grip on things..and as belinda said.. I too after being eval. in the ER by a psychiatrist.. she told me and the ER doctor that there was something more wrong with me then just PTSD.. tha was the first time I ever heard of adrenal glands.. or the body producing to much adrenaline.. she told me about get my adrenals tested and doing a 24 hour urine collection...she told me that i was not crazy..(considering that i'd been in the ER allnight with a BP of 195/145 and pulse dancing between 165-200!!).. that my PTSD while was there in a milder form.. thatit was not the cause of my BP and HR being so high... But yes.. I think that w/ my situation that being is a constant state of flight or flight for over 15 yrs. that my body got used to that state of being.. and I really have had to work at calming it down.. so yeah I think that there definatwly is a link somewhere..While I do NOT think that it is the cause of my POTS.. I feel that it did affect it to some degree in earlier years.. such as when I was 15 and under)

Michelle thank you leting us know! melissa i hope that you feel better soon dear!! BIG HUGS Linda

Hi ya bowling ball-head!! I'm most certainly glad that you are feeling better!! HUG HUGS LInda aka--wacky-tachy-dizzygirl.. hehehehehe!

Hi donna welcome to our potsy group! Now that is a bunch of bull what ssdi told you.. in my opion its crap!!.. I am 24 and i am on SSDI.. I got approved when i was 22 and filed for it when i was 20.. (though I had been on ssi from shortly after birth till I was 18 and the y booted me off saying that I was no longer disabled! HELLLOOOOO!!!!!!!!!!)... But my point being I would strongly suggest that you appeal this.. and fight b/c you are entitled to benfits my dear .. my good ness you have paid into it for how long!! I would fight it ... hey i'm a quilter too.. I love to sew!! maybe we canbe online quilting buddies!! :)--god bless your daughter and grandbabies for having to live thru Katrina.. my prayers are with them.. take care and welcome!!

hmmm-interesting topic/question.. I have scoliosis.. my entire spine is in the shape of an S.. I've wonder if they is a connection... I also have stuff going on with my cervical spine.. damage and things.. hmm I dontknow!

Luckycharm--please becarefull w/ the med trazodone...I was on for somettime.. and it can casue your Bp to get low..(i was on a very high dose of 200mh before bed).. my cardiologist took me of of this med for that reason..i pass out left and right on this med... please start at a low-low dose and gradually work your way up to a theraputic dose for you that works. and watch your Bp while on it.. dont mean to scare you or discourage you from trying it.. I jsutwanted to give my input and experience with the med.. we are all different in reaction and tolerances of meds.. so this might be a good one for you.. and wasnt for me!! take care

Hi folks.. thanks for the support and suggestions! and thank you melissa for your kind offer!!... i will let you guys know how things work out.. and hopefully there will be no freaky epsiodes on the bus... or in the bus station.. if i'm going to have one i'd rather have in at the hospital verse.. anywhere else! thanks again!!

hi folks I'm sitting here tonight wondering how on earth I am going to tolerate a 6 hour trip to Ohio On monday (one way).. its only about 4 hours driving from where I live.. but I'm taking the greyhound bus..by myself ..and after the potsy day that i'm having today.. I'm like oh man.. the thought of all that stress and traveling makes me tired just thinking about it!! my bp is running roughly 73/55 today.. and my heart rate is all over the place.. I passed out this evening. and cardionet called and recommended that i go to the ER.. I'm like no.. i'll just be miserable in the comfort of my own couch! they dont know what to do for me anyways!! my pulse is up and and down and all around.. geesh... making me feel more crappy then I allready feel.. SO i'm sitting here thinking how on earth am I going to sit upright on a bus for over 4 hours? then lay over time in cleveland on top of that?? and you dont want to lay down on the floor at cleveland bus station YUCKY!! they are dirty for one.. adn there are always some creppy critters roaming the bus station..(i mean bug wise and people wise!! hahaha).. so any suggestions would be helpfull..i allready do a few things I bring along a cervical neck pillow so that I can lean my head and neck on something.. basically have some support.. i dress in layers.. as the bus can either be too hot or too cold... and i pray that I get 2 seats to myself so that i can prop my legs on the seat.. as I get very uncomfortable if i cant.. my pain level goes way way up.. and i bring sunglasses.. and all my meds on the bus..and plenty of bottles of water/juice/gatorade and stuff like..as well as salty snacks... and carry my cell phone with me... a nice thing about this trip out.. is i am hooked up to t his mnonitor.. (and ia always crash potsy wise either during my trip /stay in ohio or with in 48 hours of returning home from ohio.. so I will be hooked up before during and after this time.. thank god for that! I'm just looking for idea's.. as i'm a bit nervous traveling.. w/ how bad my pots and syncope/paralysis is been.. adn these BP readings they are allover the map! thanks dizz

hi folks.. I talked with Belinda just alittle while ago.. she said it was Ok for me to let you all know.. she was admitted to the hospital tuesday night I believe.. b/c of weakness and her throat spasms that she has been having.. they found that she has a major innner ear infection.. and they put her on an antibiotic... and they think that her throat spasms are ANS related.. she is hanging in there though.. despite how crummy she feels.. she wanted me to be sure that I tell you that her nose is STILL THROBBING!! lol --- she might be able to come home in a few days..

did you know that dr.streeten (the godfather of dysautonomia!) would referr to the hour of about 3-5 am as the ephinephrine hours?.. i found this to interesting..b/c so many people seem to get symptomatic at this time frame in the am.. if I understand correctly..this is b/c natural the body is suppose to want to wake up when the sun starts coming..(though I cant say that I like that!! or that i ever do! LOL)..so internal clock thing.. but that this is when the body release adrenaline to try and wake your system up.. and sometime it might release a bit too much and you feel cruddy.. I thought i'd sahre that.. b/c for a good 8 yrs.. I get very symptomatic between 2-5am.. and this therory that was recently explained to me makes alot of sense!!

WAhoo!! you go girl!! gotta love new pj's!! they are SOOOOOOOO comfy!! I'm proud of you!! and as for crying.. you are entitled to it my dear!! consider it a victory cry!! Hugs linda

Ernie!! OMG!! I'm SOOOOOOOOO SOOOOOOOOOOOOOOOOOO happy for you!! this is fanstastic!! i really hope too that this is your magic pill or shot i should say!! HOORAY!! FOR ERNIE!! you go girl!! HUGE BEAR HUGS FOR YOU~~~!!! linda

hey thanks. i did not know that.. thank you!!

Sophia thank you for psoting these!! Morgan you made a beautiful bride!! and you have a beautiful family too!! I'm glad that you got to fullfill a dream of re-newing you vows!! that is fabulous!! Congrats dear!! and happy anniversary!! love and hugs linda

Jen--oh yeah loads of fun!! NOT!!! Lauren--yeah I think I'm going to look into that.. as i cant stand the itching.. and the spots like hurt and burn and well you know.. yucky! jenn-lauren.. do you think it would be beneificial and more accurate if I sent the urine to vandy to be evaluated?? verse a regular lab that might not know how to interrpet the results? (i spelled interrpet wrong i think!! oh well)

hi-- yep I'm hooked up to the monitor.. it showing so far just ht eusual stuff.. tachycardia.. my rate is running between 90-123 90 being the lowest my rate has been and 123 being the highest.. that has been recorded..I' havent been terribly symptomatic with the passing out.. and that is a good heart rate for me.. I tend to run much higher then this.. so the meds are working some i'd say!! yippef or the BB's!! No they did not come out and hook it up.. they did call theough and walk me thru hooking it up via the phone.. pretty easy to do.. I' hope that i can catch an epsiode on this thing.. i really do!