dizzygirl

I am scheduled to be seen at the CC on wednesday morning.. I was "suppose" to be scheduled to see the doc and to have the blood volume test done.. but I later found out.. that i have to have another tilt done before i can have the blood volume done.. since its been more then 3 yrs. since ive been seen at this instituition.. I'm a bit peeved b/c this was just supoose to be short and sweet.. get the blood volum done.. so i can hopefully get the documented documentation that i need to start fighting with the insurance comany. so maybe i can strt procrit injection... I feel real resistance to have yet another ttt done this would be my 5th one done i told the secretary on the phone that i've had many done.. they all say the same thing.. that i really think it unnneceasary to have a 5th done.. and that they make me really ill.. and im most certain that i dont want to put my allready wrecked body thru any more stressors..as i have yet more traveling to do the next few days that followmy appointment on wedensesday..last tilt i had done.. i havent been right from it since.. seriously i havent! im hoping that i can talk to the doc about this and that she wont push another ttt.. but yet i dont wantto seem non compliant either.. b/c i need this blood volume test.. and maybe she will have a thought or 2 of why im paralytsiing and just over all getting worse... it concerns me that i'm traveling that morning very early.. and i do not do well early morning.. and i have to fast and wont be able to eat or drink before hand..till AFTER i get everything done.. and I cant help but think OH CRAD im afraid im going to crash out badly.. not only b/c of the pots.. but b/c of the diabetes as well.. UGH.... maybe not necessarily during ym appointment but that evening or afternoon.. or following day! i feel bad for the person I'm staying with.. it i crash bad..im no fun to be around... .. darn pots im sick of it! just me venting..thanks for listening!

Lauren.. I'm glad that you have finally gotten some answers!! I really hope that once you begin and finish your treatment for lyme that you will start feeling better.. its great that you came across a kind and compassionate doctor that makes all the difference in the world!! I have a lyme related question for you...last month i had lab work done to check for the lyme antibody/titer blood test.. it came out negative.. question being can you still have lyme and have that test be neg? I'm just wondering .. again i'm glad that you found out what is going on aside from pots.. sorry that you have lyme.. but am hopeful that they can treat you and that you might start feeling better!! HUGS dizz

I sent Ling a card quite a while ago.. but i never heard back from her.. I'm hoping that she and her baby are allright!

hey there persephone! Girl you continue to amaze me and be an inspiration!! my goodness.. your campus is gorgeous!!!!!! I would so love to come visit you there some time.. WOW!! I dont have any advice on meds.. only that I am hoping to be able to start those injections at some point! But I do get and understand the the feelings that you are speaking of about your HR and not being able to stay awake and just want to sleep.. I get like alot.. and it really is not something that you can get used too...I go see my potsy doc next week and plan on talking to him about my crazy symptoms... if i find anything out I'll drop you a PM.. question for you.. when you get that freaky weak tachy..OMG the light s are going out.. do you float out of your body? just like disconnect? do you know what i mean? Its different from a normal fainting float.. I dont know how else to describe it.. only that it freaks me out...I remember that last time i had that happen.. i really thought i was dying! Hope you all dont think I'm a crazy dizz!! take care dear.. and good luck on your paper.. and I hope that you feel better soon.. BIG HUGS dizz

I have had pots my entire life... though did not know that it was pots.. I was diagnosed with pots when i was 20 years old.... and i am now 24 soon to be 25 in a few months.. my pots symptoms have gottne worse over the past few years.. but i believe that there is something else going on aside from pots.. causing it to kick me in the rear and be in such an uproar..what that something else is i dont really know..

DANG!!!!! WILLOWS!! I want to come eat at your house..YUMMY!!!!!!! NO I do not think it is an unrealistic expectation to expect todays "youth" to still respect manners.. I'm 24.. so not to terribly much older...and between my great-grandfather--gramma and parents... being rude and inpolite is totally unacceptable! and you realy dont eat with elbows on the table..(though sometime I would only b/c i need to support my head up!).. but even then.. mom or gramma would say "elbows off the table.. you weren't raised in a barn.." my mom 2 worked fulltime.. but we still where taught please and thank you.. and today's generation is kinda of scary some of them.. hoodlums.. wow... I'm sure if my great grandpappy wheer still living today.. that he would have thing or 2 to say about young girls dressing like hoochie-momma's.. or the young guy saggin' there britches...not to mention all the slang they talk with.. youre like "HUH"?? what does that mean??" DUDE!!!!!!!! talk english please! I dont know I think that manners should still apply.. something i think that parents do try with there children.. but todays society "its uncool" to be polite in public.... Know what i mean? that didnt come out quite right.. But i agree willows!!

Hi I have tried many many narcotic pain meds.. and muscle relaxers and anti inflammatorys.. nothing helps... the only thing that takes the edge off for me .. mildly.. is Toradol...if i catch the pain before it gets to too bad.. and demerol given thru IV both of them.. I see my PCP soon and i'm going to talk to him about something stronger once again..

hi all... I' too am SOOOOOOOO very glad about the aide.. WHEEEWWWWW!!!!! big load off my mind.. its so hard living alone and still trying and keep it all together.. emily.. i'm so very touched that you donated the blanket i made to the baby ward at the hsopital that is so sweet.. and it is so totally something that i would do as well.......if there is another auction I hope to be able to make some more stuff.. iwent and got my foot checked out tonight...they did a bunch of x-rays.. and good news i ddint break anything.. I was afraid i might have with the swelling and stuff.. he said that i torn some fibers in my ligament in my ankle...(i sprained it) and that i was lucky that i ddint do more damage to my foot considering the way my foot bent.. and my knee checked out allright ... that is hurting more then likely from whatever it hit when i fainted yesterday... So I get to wear this lovely looking foot/ankle/legs split thingy until my pcp says other wise.. the er docs words where.. until i'm steady on my feet.. I laughed i'm like your kidding right??.. me steady on my feet!!.. HA!!!!!! I ddint get any warning once so ever withthis faint last ngiht.. my bp was wacky tonight.. it was 145/93 and my pulse was 60.. the nurse asked me waht my bp normally ran i told her roughly 90-95 over about 57-60.. she goes really??? then she told me waht ti was.. and i told her that my BP and HR are wacky anyways.. but the pulse of 60 with my pressure that high (well for me high).. was a surprise!!!!! though its a bit concerning considering that i'm allready on 2 blood pressure meds.. and maxed out on the one!..geesh!!!! so i will hobbling around for a bit.. but atleast nothing is busted up...

hey there jacquie it is 20 hours per week.. to help with housework and stuff like that.. my foot is screaming at me.. im waiting for the ice pack to refreeze.. to ice it up again..

hey all.. i posted a while back i think about me possibly getting an aide to help me.. well i met with the coordinator today... and i qualif for an aide!!!!! thank god!!.. Hopefully once they get thru all the paperwork and stuff..an aide should be able to start in afew weeks.. and iget 20 hours of services... she put in my service plan for me to get assistance with grocery shopping and errands.. so the aide can go for me.. which is great..and will be able to help with quite abit actually.. which i'm so so very greatful for! I'm having such a hard time keeping up with my apartment... and forget laundry.. she asked me today how often i'm able to do laundry.. I'm like well.. i get 1 or 2 good afternoons or evenings a month and those are the days i do laundry... she was like wow really.. yeah really.. (that sounds bad.. i'm really not a skuzz ball!! just VERY VERY potsy..) lol.. SO i was soo greatful... bad news.. this afternoon.. i was walking from the car to the back door.. and i blacked out in the yard.. and as i fell.. my foot bent the opposit direction that it is suppose to go!!!.. it was a real quick black out.. so i know it was a BP thing going on witht hat faint.. but holy CRUDDDDDDDDDDDDD!! my ankle hurts prety bad.. i sprained it or something...i can hobble on it.. but it hurt to walks.. but i still can.. so i know its not broken.... but it certainly does hurt.. i guess i was due for a foot related fall sooner or later.... I used to fall and faint walking and down the stairs ALLL the time.. cant tell you how many times i badl sprained ankles and knee's and stuff.. good day with getting an aide.. but bad evening with fainting and my foot!!!!.. GRRRRRRRRRRRR

babs i feel your pain litterally..i wish i had something to offer you other hten some hugs and understanding! LYNDA-- i too have a hard time differentiating between my diabetes and pots.. among other things going as to what is making me feel rotten.. or what triggers what.. my sugar gets at its highest after i faint or paralyse.. it generally run about normal..other then the fainting crudd.. dizzydame.. hi fellow dizz!!!! i have tried SOOOOO many pain meds.. i have yet to find anything that helps.. currently am trying SOMA for the pain.. it helps me sleep but thats about it.. willows.. so there is a name for the feaky dots?.. now do you have the reds.. along with TONS of purple dots .. i have "dots.. that are purplish looking.. covering my legs..booty.. and upper arms.. and when i stand or get over heated they turn REALLY REALLY purple.. almost blue in color.. along with the red dots.. I always thought that the freaky dots where some genetic thing b/c my mom-aunt female cousins (a few of them) and gramma.. and me.. we all have the darn dots!... all the women i mention are realted thru my mom.. moms mo and sister and nieces.. pain is a bit better today..

hi all wanted to pop in real quick.. and say hey.. I'm still in pain but it has lessoned some since i posted.. cant say that my feet are loads better.. but something is better then nothing.. interesting about the raynaurds.. i do have that..i will bring it up to my doc in a few weeks.. willows.. i get funny looking red tiny red things.. they are no bigger then like apoint of a pin.. or sewing needle.. i dont know what they are.. only that i get them primarily on my arms hands feet and sides of my face... i asked a doc once what they where and i got "an i dont know" perse.. good to see you on here dear.. i read you recent funny post.. you have a way with words deary and crack me up!! hang in there dear!! thanks all for the support.... HUGS to ya all dizz...

willows... yeah you describe it well dear.. and yes i become super hyper sensitive to socks blankets and anything rubbing on my skin.. like for instance.. last night i was so incredibly cold.. but i could handle the pressure of a summer blamnket on my skin.. do your toe and finger nails ever hurt alon with it?...and your hair roots and skin as well? and yes i more often then not feel as though my feet/ankles/wrists.fingers are broken... when in actuality they are not.. and you are so right that nothing that i've found on gods green earth..(yet) helps it....not pain meds.. heat nothing..muscle relaxers.. and now since they've seen that i'm allergic to so many [ain meds.. they are leary of giving me anything new to take.. not that i think it will help... sometimes if i catch the pain like early.. i do mean early . sometimes dmerol thru an IV will help.. but that is rare.. and it only delays the inevitable.. thnak you willows for your support.. if i ever find out what this is or anything that helps its.. i will be sure to let you know dear.. you hang in there too dear.. oh do your docs tell you that they think you swallowing problems are neurological? i called my pots doc last week.. and he thinks my swallowing stuff is something neurological...what that something neurological is.. nobody seems to be able to figure that one out.. i've been in just the last 2 years or so to 4-5 different neuroligst and ben seen by a few in the hospital as emergency consults. thye all tell me that my case is too complicated and that they cant help me... boooooooooo

i'm sorry that you had to leave your job b/c of pots.. that really stinks....and im sorry that you had to deal with such a mean admin. and that co-workers lost there sensitivity... I hope that you are able to complete your schooling... working from home might turn out to be the best thing for you right now.. take care dear hugsdizz

I have been having a hard time then usual deal with my bone pain..hte worse my pots and paralysis gets the worse my bone pain level is seeming to get.. and it was allready on an extremely high rating on that pain scale.. its beyond unbearable ...and there is very short breaks in between.. "spells".... a few days ago.. the pain was bad.. after a paraysis epsiode.. and that left me having a hard time walking.. and i could not use my right hand to write at all.. i could not bend my fingers to hold and pen or pencil.. that is just pathedic... whatever is causing or creating or contributing to the pain pain is really affecting my freakin' feet...i'd say the majority of time these days that from my ankles straight thru everybone in my foot and toes.. feel like that they are broken.. and i cant bare weight down on them and 100% have to depend on my wheelchiar to get me around..and forget being able to wear shoes.. that is out.. i get alot of stares going out of my apartment in big blue bear feet slippers.. that are glittery by the way... but its all i can manage to stick my feet into...cant ear another shoe b/vc i cant handle the pressure on my feet skin or bones.. yesterday morning.. iwas released from the hospital again...thye loaded me up on fluids.. and friday morning i felt REALLY good! whic i was so incredibly greatful for.. b/c i was able to eat and drink with no pain or isck yucky feelings or choking..and i wasnt dizzy at all.. and could walk around with no pain or no usually potsiness ging on.. I was a very happy dizz yestrday morning.. I went home and enjoying being able to shower during the day... and wear clothes that ddint consist of jammies and nultiple layers of socks and then slipper socks..i even curled my bangs.. something that never happens these days!.. and to top it off.. i was able to fit into a pair of jeans that are 2 sizes smaller then I was wearing 4-5 motnhs ago!.. I've lost almost 20 pounds since about may of this year.. which is good.. b/c i need to.. but its the pots causing it not being able toe eat.. But ifelt great yesterdya morning... i layed down ealry afternon.. just b/c I had showered and all the that and didint want to over do it to fast.. so i layed down for a while.. and when i got up my b/f and i went to the pharmacy and the grocery store.. well about 5 minutes into the car ride..i started to feel kind of blah. so the seat went reclined... 30 minutes later...my brain started to feel like it was being squeezed.. and that caused all the bones in my head and face to hurt.. not a cool feeling.. along my jaw.. it felt like i had a really bad tootha che.. minus the toothache.. and the pain in my head causes my ears to hurt badly... awhile later.. the nausea hit and then beginning at the base of my head/neck.. i got this wierd feelingin the back of my head.. and it caused this funky feeling thru out my entire body.. i felt it travel down my spine.. it caused a numb weakness thru my enitre body...it is a horrible feeling.. that i still have to a milder form this morning.. I also got this grinding popping sound in my neck it sounds like those pop rocks candies that you can eat.. and they pop away in your mouth.. fizzing.. like.. well it kind of sounded like that in my neck.. and it made me nausea unbearable.. and caused me to feel like my esopaugus was closeing.. we can home and i sacked out in the recliner.. and propped my feet up hoping that it would help.. and i just kept getting weaker feeling.. and i started getting the chills badly and then was shaking un controllable from the inside out.. i felt like i had the flu... and like my brain was just going to explode inside my head.. the pressure.. and squeezing was so bad..i actually considered going to the ER..(my least favorite place on earth)...i kept feeling like the recliner was moving backwqrds and i was going to tip over.... i took some tynelol and went to bed.. nothing helps with the apin or pressure and squeezing...iwent up and laid down.. and the pressure and stuff going on.. i tired closing my eyes.. and the muscle or something in my eyes where really tight!!!!!!!!! i couldnt close my eye lids!.. cant say i've ever experienced that.. but ok weird!!! I slept a solid 12 hours straight.. and am ging to go back to bed shortly.. but this pain.. and ealing with the brain squeezing and presusre and that funky wierd numb-fuzzy-weak.. OMG i think i'm dying feeling is not cool at all.. and i'm not getting much of a break from it ever.. i'm hoping to be able to make my appoint in Long island in November.. there is somethign wrong with me.. either along with or seperate from pots.. whatever it is i cant handle it..i have long since bypassed my threshold for this pain...the pain with in the joint amazes me and has stumped so many doctors... thanks for letting me vent folks..I keep falling alseep crying b/c the pain in my bones is unreal..after tci.. i'm unsure of where to turn for help... i am greatful though for waking up friday morning and feeling well.. it those brief moments that i truly charish.. and dont take for granted...afew hours of relief is better then none at all.. apainriddleddizz

nina am i reading right? did you have tubes put in your ears without being knocked out? if so.. holy cow! girly!! I had tubes in twice when i was a kid.. and i remember crying when my mom would put the ear drops in my ears.. i would try to run from her..lol.. (i as only like 5.. then again at 9..) im amazed that you went to work as well.. my goodness mightymouse certainly fits you well... i recall the first time that i had tubes.. i was there from sun up to well after sun down.. and the 2nd time.. i got really sick off the put you to slepp stuff.. my goodness!!!!!!! you are a trooper! Oh yeah dont feel bad about the house work!! its not going anywhere...and if you need more variety for frozen dinners.. healthy choice has some yummy ones.. feel better nina hugs.. and i hope your ears feel beter or start to feel better now that you have tubes!

I'm so glad that she is at mayo now.. I really hope that they can help her and that she starts to feel better! thanks for letting us know.. please let us know how she is doing.. take care and god bless you both hugs dizz

Dar, I get the electrical sensations .. i get them during adrenaline surges.. and the really bad ones leave me unable to move.. its not cool at all.. Um.. I spoke with somebody about this in the past few months.. about the elctrical buzzing stinging.. shoick thing.. and i was told that when you feel like to try and salt/fluid load and see if that helps you.. goodluck!

nina yeah i know.. i know that she cant do angle flight... but maybe a medical transport.. i mean where maybe b/c she is so sick that she coudl qualify for some kind of help.. maybe a nurse or something would volunteer to fly with her o something.. or ground medical transportation..cant hurt to look into.. just trying to help ..

i'm sorry about your kitty nina.. big hugs

ok here is the website i was thinking of.. you (linda's hubby) can go to... www.wishesandrainbows.org on the main page you scroll down and go under assistance there is a link under there called patient travel assistance program.. click that and it will bring you to a page about National patient air travel..(helpline 1-800-296-1217 is there number).. they have a program called mercy medical airlift.. you have to have you doc prove medical necessity and things like that.. maybe they can help with airflight to get linda to where ever she is able to get into.. i "think" that it is a seperate program from anglet flight.. though not 100% sure.. I hope that this helps some.. and that she finda somebody to help her..and gets away from those docs that think she has psych probs.. that is $%*!!!!!!!! goodlcuk

wow linda is going thru alot.. what about looking into a medical transportation flight? I just seen somewhere about meds flight.. I will searcha round and see if i can find it... and my next thought was what about vanderbilt or something> if she is able to arrange med flight? my thoughts also went to mast cell.. and allergy or something... Im sorry that she is feeling so badly.. and i do hope that she is able to get some help very soon.. please sned her big hugs from me!

yeah i would get a second opinion too dear..i have a cyst on my pituitary gland and a lesion on my pineal gland... pretty serious surgery.. i would chek out all your options.. and get another opinion from another doc or many docs.. goodluck

hi i know what you mean.. this past may i went to MUO er and i was treated HORRIBLY.. and left there in tears.. I felt like i was going to kick the bucket.. and they did nothing for me.. and this doc knew dr.grubb....and knew what dysautonomia was.. didnt matter he did nothing.. I do mean nothing.. oprthostatic vitals where done right before i left only to cover there rumps..

I'm so very sorry for your loss.. please take extra good care of yourself during this time.. hugs dizz