dizzygirl

LING!!!!!!!!!!!! dear are you and the baby ok!! I know having a new baby at home is tiering and add pots on top of it.. god bless you!! I'm still wondering how you both are... take care dear love and hugs linda

happy belated birthday dear--so sorry i'm late on chimming in here.. been off in my own little world lately!! MMMMM red velvet cake.. OMG all this talk of cake is making a dizzygirl hungry for some sugar!! m personal favorite cake is a black forest cake!! YUMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMY Happy b-day girlie!

Happy belated birthday dear!! iagree with tea.. bring on the cake! and the ice cream!! YUmmy!YUMMUY!!!!!!!!!!!!!!!

happy belated birthday tea!! soo sorry i ddint see this till now!! love and hugs dizz

i just signed up.. i love the idea of a book forum!! and i've got a good book i read awhile back to chat about!! happy reading to us!

i did not take the benadryl.. i sat in the shower and ran cool water on me.. as that sometimes heads of a bad adrenaline surge... i used some aveeno soap (oatmeal to helpw itht ithcies that with the cold water helped me alittle bit... but the surging tonight is inevitable i suppose

Ola folks I'm sitting here.. and for the past few hours I fel like there are bugs crawling on me! I'm getting terribly itchy... and really tachycardic (right now running at about 150-160).. yucky...I'm can feel the adrenaline starting to surge thru my body.. and i got the internal shakes... i keep trying to focus my vision.. but everything si like allred looking..even my white walls!! How do you all get rid of the the creepy crawly feeling? I'm about to pop a benadryl.. thinking that might help.. but am looking for pointers!

here here julie!! I have a serious bone to pick with that dr. mullet!.. stupid ding a ling But have no fear julie.. your schizophrenic-bio-polar-manic depressive-anxiety rittled dizzygirl is "here to save the day" (imagine me saying that in a singy songy voice..lol hahah..scary thought!!me singing.. i might shtter some glass with that lol! ) and set some folks straight (doctors) and light some fires under some booty's! 9doctors and nurse's and what not) But yeah I decided that I'm going to do waht Jan suggested and chart the vitals.. and the symptoms.. as i think it important to see.. at the time for some of the way high BP"S.. i ws only 19.. a girl of 19 should not have a bp of 195/145... I'm sorry but i dontbelieve that any amount of stress or "supposide mental" disorder can cause a BP like over and over... and a I never heard of a mental health disorder cause such intense pressure in the head and brain either... So these Dr. mullet cracker jack box docs really need to get educated on the true ligitamacy of the serious natuire of dysautonomia.. chiari.. or any disorder that is considered "rare" or invisible" and take into account that just b/c they dont know what is wrong doesnt not mean that the pateint is amental health patient... or what they are expereincing is "psychosomatic" b/c they cant find a cause!!!! HELLLLLLLOOOOOO Huston we have a aproblem! sorry i ramled a bit...but no i dont plan on mailing these to anyone... thanks julie

shoot girly I give you credit.. a few weeks ago I was having a good moment.. and there is an exercise room in my building. so I plopped my big buns on the stationary big.. its the kind where you peddle and move you arms back and forth with the handle bars... and i started to get really symptomatic after about 30 seconds and my heart rate was FAST.. but i pushed myself and did 2 minutes.. and i got off the bike and my legs felt like rubber! and my ticker was a ticking! I havent gone back on the bike since it messed me up.. maybe next time i should take my own advice. and go slower and and pace myself! hahahlol.. oh well.. good luck dear happy walking!

"I HEAR YOU!!!!" and i do understand what you are going thru.. and am amazed that you are still in the army and working everyday.. amazing dear! I understand why you are worried about leaving the army.. I stayed in school when I probably should have thrown in the towel.. b/c the excess in school aide and student loans.. is the only way I made it when I was waiting to get on SSDI... so i certainly understand.. take care.. and know that we are hear for you if you want to talk...!! you dont have to pretend to be ok here! you can let it all hang out... lord knows that I chatter on and on sometimes!! LOL

thanks folks !! that is a good idea to make a list of the BP reading and HR and stuff like that.. GOOD IDEA!!!!!!!!! Nadine--yes I have a fw things in my old chart that I would consider WRONG!!!.. Like Big time.. Ugh!! I needed to vent.. as these "records" made me angry.. goodness!!! i really do not have a psychological or psychiatric problem!!! I feel I have to defend myself there.. even though I know that you all understand and have been there done that!

HOORAY!! on your victory of walking for a 1/2 an hour..!!!!!!!!!!! pace your self and do waht you can handle and slowly work your way up!!

Hi folks.. I am wondering.. today in the mail I recieved a huge stack of medical records from the state and treating doc that i had ebfore I moved to PA. I was reading thru the recods and while it truly shows my BP all over the map and my heart rates up and down like a yo-yo..some bp readings where 160/122 160/112.--191/120 and pulses ranging from 60 to 200.. now i think that that is something worth showing to a doc.. however in just about every office visti and every sheet of paper it talks about mental illness.. I'm not mentally ill in any way shape or form) and people who really know me.. know that I'm not mentally nuts... I'm pretty level headed and calm.. But it talks about how my heart rate and BP's are more of a result of mental or psychological affects.. as the same for the excuiiating pain that i suffer from daily...I'm sorry but this isnt psycho-somatic!! They insisted that this was psycho-somatic.. a few times even after seing my HR in the 200 range (in 2002 before i was diagnosed with pots).. and even sent me to a psych ward during one Er trip b/c my HR and BP would not come down depsite the fact that they where pumping me full of fluids... (they psychiatrist deemed me as mentally stable by the way with no mental illness! ) and she reemed the ER doc a new booty hole for sending me to a locked psych unit.. when I need to be kept in the ER.. only then did they call in the emergency neuro consult! GRRRRRRRRR sory brief rant there! they just couoldnt undersand these docs back home why my heart rate would go so high when I'd sit up or stand.. HELLOOOOOOOOOOOOOOOOOO!!!!!!!!!! They also put in my reords that I was non-compliant with them regarding psychological and psychiatric care... b/c I knew I wasnt mentally wacked out!! that is why!!...).. but i refused to go to these kind of doctors and go on psych drugs... and I sought out pastoral counseling instead.. I dont want to over step on the religion front.. But when I got really sick in 2002.. it turned my life upside down.. ( as I'm sure with everybody here) ... and I had quite a few traumatic events happen to me/in my life.. and I decided tot ake a different approach in dealing with the blows and changes that life was giving me.. I went to pastor counseling.. and I worked with a pastoral counselor who dealt with ppl who where sick and dying (i'm not dying.. but that was waht he dealt with).. anywho I just need a spirtual guidance... and needed tot ake a different approach to things... pastoral care worked out great for me.. that is what I needed at that particular time.. the pastor would pray with befoe and after each session.. that we would find the cause behind waht was making me sick... and about 2 months later I got diagnosed.. call it persistance on my part or divine intervention.. sorry i'm rambling here... the records just upset me... as I'm not a looney bird.. and I'm afraid that If I sned these records to vandy or any other facilty that they are going to think I'm a real nut job... yet on the other hand there is alot of valuable information there.. things that make sense now that i know what was happening.. Like the severe headaches.. I now know that its neck/pots realted.. the visual things.. pots related.. the cognitive.. not ebing able to pay attention or focus or just being kind of dense and "incoherant" on ocasions that is this not so lovely pots.. and those so call anxiety or panic attacks they thought I was having.. they arent panic attacks.. not in the true sense of panic attacks.. they are adrenaline surges!! and that the funny noises i hear in my head hello its not (buzzing humming.. high pitched sounds) schizophrenia!... its potsy too!!!!!! GRRRRRRRRRRRR what do you think folks.. should I just leave them out of the mix of things? or maybe send them along.. and attach a letter saying that I wasnt yet diagnosed yet? I've been misdiagnosed so many times.. at one point a shrink thought i was bi-polar..b/c i was telling her of some of my potsy sysmptoms which she construed as manic cycling!! needless to say she was very wrong!! my PCP set the record straight on that! it just scares me you know not only for myself but for people in general that dcotros and mental health professionals are lableing people with all these mental health problems.. based on things that are more medical the psychological pure and simple... I'm not a nut bag! sorr folks..this kinda turned into a vent! I meant to ask a question it being: opinions needed on sending these records please!!! thank you~

I'm so sorry for the loss of your frineds.. that can help throw anybody into depression my dear.. or can make depression that is allready there.. worse... learning to live with pots is very hard...I wish I had some words of wisdom for you.. living with chronic illness.. i think has the same kind of acceptance process I think.. depression is part of the process...But if you let the depression go and dont deal with it ti will over take your life... hang in there!! hugs linda

HEY!!! stranger!! long time no see!!! Happy birthday!! hugs dizzygirl

what a gosh darn jerk!!!!!!!!!!!!!!!!!!!! I'm so very sorry that you had to deal with such ignorance dear..hang in there dizzygirl

yup i get pre-syncopal sitting laying and sstanding... I pass out sitting laying or standing... passing out while laying down baffles me.. as hello I'm allready laying down! good luck to you

i hate summer! to gosh darn hot for me! I'm ver heat intolerant... there really is no good time of year for me.. winter is too cold.. and can make me just as symptomatic.... and fall and spring..(spring more the fall) um the chaging of season is always rough on me.. I'd say i do the best in the fall.. if you can call bad being the best that is!! but welcome to our slice of cyber space.. and good luck at vandy in october!!

Hi jacquie I'm sorry that you friend let you down... that really bites! When i started to get really bad in 2002.. I lost just about all of my friends.. either b/c they didint understand what was happening- or thwy did understand and felt helpless in there being anything that they could do to help me.. my friends who stuck it out with me since 2002.. I consider true friends.. as they stuck it out with me thru some very rough times.. and now when things seem to be getting increasingly difficult.. support shows up litterally on my doorstep. Though i lost a good many friends... I have gained some wonderful friends who I feel very blessed to be in my life... some from here on the forum!!!.. and had i not gotten sick I probably would never met these folks.. what I'm trying to say I suppose is.. I know it seems incredibly infuriating your friends lack of compassion and understanding... But Hopefully some people will be led into your life to fill the lonelyness.. who will aprreciate you..and will have some compassion and common sense to kind of bend with life.. and have some cleaver idea's to bring "life" and the "party" maybe to you.. on days that you just cant get out and about.. cheer up dear and hang in there...I'm sending you a PM too by the way! you can call me if you are feeling blue or frustrated or just plain board!! I wish I lived closer to ya we could hang out.. next time i come to mass for a visit i will let you know!! BIG HUGS! linda mom4cem i like your idea of all of us living in the saem town.. we could call it "POTSYVILLE" lol !.. lol.. hahahaha

thank you sally i will check that site out.. I do have joint pain all of the time.. and swelling at times as well..I'm not typically hypermobile.. but i do bend in some "akward positions" that creep people out... thank you!

thanks all! Morgan I have been going thru my medical records as they are coming in.. and looking at my labs too, and I've noticed that my potasium levels are often low...though i havent seen any recent labs in he past 6 months I'd be interested to see what those show.... I also noticed that when my Heart rate is over 200bpm and my BP is 191 and higher that that is when my potassium is low.. I have an appointment with a new PCP On Monday.. poor doc I'm going to throw alot at him.. hopefully i dont scare him away!! Maybe I wont.. as he has treated my entire family (parents brother aunt and grandparents!) and let me tell ya we all come in with a wide range of odd complaints! so hopefully they will take the stuff seriously Lauren.. yes please do send me the phone number for this doc..!!talk about miracles.. I was just thinking when I got up this afternoon that maybe I should find a doc that treats just muslceproblems.. havent ben to a muscle doc yet.. my mom has been saying since I was a kid that she thinks that i have some weird freaky muscle disease.. thanks folks

good thinking Morgan! I'm not able to get one the site as much as I used too, and when I do get on.. its not for ling these days... i keep seeing all the news names on the board.. and want to exstend warm wishes and welcomes.. I'm sorry that dysautonomia brings you hear.. but am glad that there is a site like this for us dysautonomia folks to come too.. you will find peole to be freind here and will find comfort in knowing that you arent alone.. this site has been a godsent for me and others as well so welcome newbie's!! HUGS dizzygirl

me again.. i wanted to expand a bit on what i posted about a few minutes ago.. along with the lack of muslce tone and stuff.. I've noticed the past few weeks during a paralysis spell that as i begin to gain feeling or bones back ( sounds crazy i know!! but i dont know how else to describe it)... as I'm trying to move my fingers or wrist or toes ( particularly on the left side of my body).. that my joints in my hand and wrist and toes are very mobile.. they bend all over the place.. and after I gain most and then all feeling back and try wiggling my fingers and stuff.. that my fingers especially snap in and out of there sockets... and my joints at each bending point in my fingers and toes and wel everywhere... I've wondered as well as a few people have said that they thought i have EDS.. But from what i recall.. doesnt EDS generally efect really petite thin people? I'm far from thin.. though before i got really bad with pots..i was really skinny.. so i dont know.. any one got any idea's?? thanks dizz *****sidenote*********.. the apin from the moveable finger and toes is quite painfull... but generally I'm not hypernobile.. am i sounding crazy yet? t

HI folks... over teh past few months and more recently (few weeks) i have been having bouts of extreme weakness.. where i cant even hold anything.. or barely move.. for that matter..especially after paralysis spells.. its taking longer and longer for me to recoop from it... I'm having paralysis now when I'm fully awake.. and I've noticed that one side or all of my body will loose muscle tone.. its just flabby.. it feels like there are no bones in my arm or legs or arm hand and neck...I've called my potsy doc. office and they said that isnt a common or normal symptom.. but i'm not sure where to turn for help on this one b/c I'm afraid if i go to a doc other then my pots doc that they will lobel me as nutty its I go in and "say I feel like I have no bones during these spells".. anyone know what I mean? But I kind of feel as though I'm fighting an unfightable battle.. I'm growing weaker and wealer it seems as the days roll by... I'm using my wheelcahir about 90% of the time now... and I am having a hard steering the darn thing.. I'm taking the paint off the walls..b/c i feel like weak and cant steer it.. I'm trying to do some resistance exercises to build back up my strength.. and stamina.. but it doesnt seem to be going real fast...I bought 2 little dum-bells (they are "pink" hahaha).. I bought 2 -2 pounders.. they did not have 1 pounders.. and you know tht they where to heavy for me to lift! that is just down right pathedic! GRRRRRRRRRRRRRRR SO I'm going to try and use them... and I'm trying to find some ankle weights that come in 1/2 pound dealies...still looking..my b/f has this hand grippy thing.. and he is making me try and squeeze on the lowest setting...I tired to do that... and i couldnt.. i started shaking like abowl of jello... so i used both hands to squeeze it.. i still shook alot but managed to squeeze it a whopping 2 times~!!!!!!!!!! My doc suggested that i used soup cans to start off with.. as they are lighter and work my way up.. do any of you have any muscles resistance/ regaining strength exercises or any thing that might be of help to mne? I worked with a PT dud a while back and he gave me some legs things to do... i manage a few a day. but my feet and ankles start to cramp up badly.. ouchies.. I dont know what is going on or happening to me.. but I'm trying to fight it. and find something even it if seems really little to do.. and like to outsiders tath it wont make a diference.. but amybe it will.. who knows thanks guys jello blobs girl

you go girl! with your boomer-rang self!! that really does fit you well!! Hope that you are feeeling abit better.. hugs and love linda