dizzygirl

Oh my Julie.. i really hope that you feel better! SOON!! let us know how you are doing once you are up to it k?? love and hugs Linda

YEAH ERNIE!!!!! OMG! I'm so relieved that you made it thru the test well... and ddint need an IV afterwards to boot!! wow that is great!! I'm impatiently waiting with you to hear what this neuro has to say about your paralyse.. and yes our prayers and good thoughts.. were with you today.. good for you ernie.. so very glad that you are OK!! Love and hugs Linda

Vanessa-- I'm so sorry.. itruly understand all that you are saying.. living with this disorder is very very hard.. and sometimes or alot of times you will need to cry... I know I'm terribly emotionall this last 6 months or so.. I cry at goofy commercials On TV!! LOL.. but its a release for me.. anyways I just wanted to let you know that you are not alone my dear.. try not to be harsh on yourself OK!! BIGS HUGS TOYA Linda

hi.. i was born with tachycardia.. really i was!!..my mom says that my heart has beaten very fast since I was born... i can really remebr though being about 4 yrs old.. and being at childrens hospital in Buffalo NY.. and I kept telling the doctor that my "heart hurt".. only at 4 yrs old.. I didnt know that it was tachycardia and chest pain.. around through out childhood.. I had alot of concentration problems...shortness of breath.. and constipation..well cycles of constipation and vomitting and diarrhea.. I can remeber my mom making me drink prune juice.. YUCK.. and then for nausea and stuff my father would give me Milk of mag.. also YUCKY! so through childhood I had ~tachycardia ~SOB ~concentration difficulties ~constipation ~diarrhea (GI issues) ~ severe fatigue then and now I wasnt able to run around and ripe and run like other kids my age either.. my chest would feel like ti was on fire.. and my heart would beat so fast.. it made me feel sick.. that and my legs always felt "weird" and once I hit like 11-12 yrs old.. EEWW! HOLY POTSY !!everything under the sun.. I missed so much school...in combo with pots ( we ddint know it was pots though) myparent always thought I had the flu... and I would run pretty high fevers.. and the chills sucked big time.. and I'd often have lung /bronchila infections as well.. I'd wake up in the AM and feel horrible.. and sleep all day long.. and by the mid afternoon I'd start feeling better.. then again in the evening I'd start to crash again.. SO now days.. I have more sysmptoms then I care to think of.. I do have moments though were i feel OK.. and can get some basic things done.. for me pots has gotten much more sever and intense... I got diagnosed finally..in Novemebr of 2002 after a positive TTT... I believe that there are some genetic factors going on in reagrds to pots w/in my family.. as i see dysautonomia in my mom for sure.. woithout a doubt.. and also in my father.. as well as multiple mememeber of the women in my moms side of the family..so I lived a good 20 yrs with pots before anybody figured it out!!

Hi...Yes that is what i am trying to do.. et discharge b/c of my health issues... I was not in the army.. sorry for the confusion... AES stand for American educational services..for student loans to help pay for schooling exspneses... what i mean by discharge/forgiveness.. is to have my loan um .. written off?? I'm not sure how to explain it.. so I dont have to pay back the loan debt .. since I am not able to work.... and am on disability.. whcih as most folks know .. when that is your only source of income.. close to impossible to live off of... I too am hoping that I can find a crack in the system... thanks ernie!! Linda

I hear ya ernie! I know last yr when I had to stop my schooling.. that I was terribly disaapointed in myself initially.. but not depressed like i thought i would be .. iactually was relieved that i didnt have to fight with my body on a daily basis.. just to get up at 5am to catch the 6 am bus into twon to get to my 8 am class!... I'd be so tired when i got home that i'd crash out sound asleep.. I ended up in the hospital in october of 2004.. and after that i had to finish up my semester from home.. thankfully the school and teachers were great.. and I finished my term paper and (about POTS) and got a B+ on it.. and passed my classes with solid B's all the way around... so I was proud of myself in that aspect.. but more diappointed b/c I only had about less then one yr to go before I graduated... But as you said couldnt see spending any more money on schooling.. when it didnt/doesnt look like i will be able to utilize my schooling in a professional setting anyways... But.. still am fighting with AES to get my loan discharged.. so I dont have to majorly stress about paying that back.. and wonder how I will make it finacialy.. I pray that something opens up for me soon! and again have to really commend you guy who are working still or going to school.. and have families to take care of.. that is really amazing to me how you guys juggle like that in a potsy body.. god bless ya~ dizzygirl

hey guys.. I have been going round with the AES here in PA.. about getting my loan forgiven (discharged)... since like april of this year.. well I sent an application in in like May/June and it got lost.. so i sent another one in.. and they said the information was not complete.. so yet another form was filled out correctly and they denied that b/c my cardio at the time stated that my disability began in 1995.. when in a sense of the word...is true but.. as a teeneger I didw ork and attend coolege before I got very sick.. so now.. I had anew form done by a different doctor.. and they (the docotor's office) lost it! they have no record of it any where in my chart.. but they charged me a fee to fill the form out.. and cashed that checked.. and I have no form to turn in!! Now to be truth full I'm not exactly certain when my date of disability began.. as I have had it for a very long time now.. at the age of 11-12.. i got very symptomactic.. and stayed that way for years.. then at 19.. i got even worse.. then started doing alittle better...and went back to college... then crashed again.. and have progressively gotten worse over the past yr. In a realistic sense of the word i can say that my disabilty(s) have been there since birth..but at the age of 12 I got sicker at the age of 19 even more sicker.. and now at the age of 23.. i am virtually house bound.. and now have to use a wheelchair.. last year my PCP didint leave alot of room for negotiation concerning school.. she wrote them a letter.. and they(school--dean) talked to me and so on.. and here I am a yr later.. so I am wondering how you guys have handled this?? They told me on the phone today (AES).. that I would not qualify b/c i was disabled before I went to school.. I dont know what todo!! there is no way that I can pay over $200 loan payment every month for the next ten years.. and I take blame for my own stupidity in not coming to terms witht the fact that "hey girl tis is serious!' I was still in denial that this pots was kicking my rear... and wanted to prove to myself( and family=friends) that i could still follow thru with my dreams and goals despite the fact.. that i' couldnt handle a 2 hour class at one time.. or pas out at school or on the bus.. or had to leave early so many days b/c i couldtn see straight or hold my head up.. not to mention the days where I'd get up and pass out beore I'd leave for the 45 minutes bus ride into town.. so I stuck it out.. with out being realistic.. and thinking "how are you going to pay this back?" I couldnt accept the fact that multiple docs were telling me that chances of me working again where slim..and unrealistic...I was being stubborn and in denial.. Ok sorry fot he vent there... any inut would be appreciated dizz

Sonshine.. that is wonderful!! I'm very happy for you I hope that you will start to feel better inregrds to svt being cleared up.. HUGS dizz

Oh wow lauren.. I'm so sorry that you are having such a rough night.. and sorry that had an arguement with your boyfreind.. and such a scary passing out.. that really bites the big one.. I wish I had words of wisdom for you... just wanted to let you know i understand what you are going through.. and can relate to things.. will you be living with somebody once you get to maryland?? I hope that you will have people to help you there.. take care lauren! HUGS ~~ HUGS ~~ and more HUGS!! LInda

OH MY GoodNEss Morgan!! I pray that they kind find somehting to help you.. HUgs Linda

HI Lois ~~~~~its good to see you on the board! wow you have been going thru alot.. !! thats great that you only have one chemo session left.. youu are an incredibly strong women to be going through chemo..alone let alone living with pots too!! God bless you.. anyways good to see you back HUGS to you Linda

Julie-- so sorry that you arent feeling well.. wish i had some magic words of comfort for you! But here's a HUG! Linda

Ernie.. wow.. thank you for sharing your secret with us..that is quite the burdon that you are carrying around inside of you for all this time... I wish that I were there with you tonight b/c I would sit there and talk with until you felt better.. and I wouldnt worry about making people worry ernie.. you worry about what you need to do to keep your self sane and with in a support system.. you are a strong women ernie...and it had to take alot of strength and courage to step forward.. and you offer so much to all of us.. let us give something back to you.. and let us help you through this.. what ever this may be.. I.. we.. are here for you ernie!! You have to be strong considering the type of crazy things that we deal with on a day to day basis.. not to mention other things!! I wish that I could find that magic pill for you!! take care ernie.. BIG HUGS to you my dear Linda

Miriam.. I am so sorry for your loss.. prayers and hugs to you Linda

HAPPY BIRTHDAY SUNFISH!! HOPE YOU DAY WAS FAB! AND THAT YOU ARE FEELING OK TO ENJOY YOUR SPECIAL DAY BIRTHDAY HUGS! LINDA HMMM.. this was suppose to be purple!

Hi.. do you get migraines?? I know I do.. and i get these pains when I'm about to get a migraine or have one...I dont always have pain with my migraines.. but aura's and lots of visual disturbances..does that sound weird?? But yeah.. talk to your neuro about it.. hang in there!

i have found that execising in apool is alot less stressful then exercising on land... as when your body is in the body it is lighter.. taking stress off the body.. and it is relaxing too..just be sure that the temp isnt too warm for you.. that you can handle the temp of the water.. I start water theraphy next week.. and am actually looking forward to it... I have a real hard time with any other form of exercise...as i just cant handle it.. I'm going into water theraphy for my leg pain.. and to strenghten my legs muscles and stuff like that.. on a good day I like to take a walk.. even if it is short.. i realize that that isnt like a real intensive kind of exercise.. but it still makes the body feel good if you dont over do it..though these days not alot of walking is happening... So I am hoping to learn some exercisies that I can do laying down to keep my legs and arms from go to h@$l... and getting real flabby.. good luck.. i hope that you find something that works for you! Oh yeah.. in reagards to pool stuff.. the PT's will get in the pool with you.. if you are uneasy in the water... and insurance typically will pay for it..you can go through your local hospital or rehab place or any where that has a pool..

oh boy... that has to really suck being at work with no AC! Do you by chance have a fan you can run on you? Um do you work in an enviroment that you can prop your feet up?? that will help with the pooling in your legs..so will compression hose.. if you can tolerate wearing them... they will apply mild compression that will push blood back up to the upper half of the body... can you put some ice in a baggie or get an ice pack and wrap a towl around it and place it on the back of your neck?? and keep drinking the ice water... try to keep yourself as cool as possible.. your headach might be heat related... and those are no fun.. if yuo dont feel better soon.. can you explain to your boss or supervisior that you have a condition of the ANS.. and you body does not regulate body temp. correctly.. and go home..b/c you arent feeling well?? I hope that you feel better soon... linda

ME~~~~ hey girl! I can totally relate to the pin and needles feeling.. I get it alot in my left side of the body..primarily in my hand.. and from my knee down to my toes on the left leg.. nothing relieves it.. it tends to go away on it own.... it is very annoying I know... Also I get the electricity feelings..when I am feeling syncopal or having a rough time with pots.. I will often feel like there is electricity surging through me head.. from one ear tot he next ear all the way across my head.. the sund resembles a cross between a very load humming and the sound that electrity makes when it .. when a elctrical wire hits water.. does that make any sense? also if I have a bad syncope spell..I will feel like there is electricity surging through my body..mostly head arms and legs... I'm sorry that i dont know what casues it.. ro how to stop it.. only that i can relate... I really hope that you start to feel better soon! I wish I had words of wisdom for you.. I'm in the canyon myself.. and just wanted to let you know I'm thinking of you.. and hoping for better times ahead... hang in there melissa! Linda

Hi guys! thanks for the info...I talked to the dr.'s office today and they got some samples for me.. so I am looking forward to a good nights sleep tomorrow! YEAH! thanks again for all the support and suggestions!!

Persephone.. I'm so sorry that you are in apots hole yourself this week.. I know how you feel... just wanted you to know I'm sending you lots of cyber hugs...keep remembering those manuscripts that you loved and felt so good about last week.. HUGS to you Perse.... Linda

Carmen arent you sweet! cocoa would be great.. with coolwhip! tracy.. hi.. thank you! no I dont have the flu.. this happens alot.. and for some reason last night I just was not handling it well.. pamela..I'm sorry that you too had a hard night.. i feel for you!.. I hope that you are feling better this afternoon... thanks lauren! as for me I'm still feeling verybad...i have 'sore" spot all over my body.. and my bones hurt to the point that they really fel like they are going to break...and jsut shatter...my hip is hurting badly as well....the chills then hot flashes are still there... oh boy!..I have been laying down all day.. and did actually fall asleep for about 30 minutes then was back up again.. so a short time is better then no time I suppose... I'm tempted to call dr. grubb's office.. but just talked with Bev yesterday.. and I dont want to be a pain in the rump....I have to wait for the perscription to arive in the mail.. then maybe I will start to feel human again once I start those other meds.. GOD! I am on SO much medication it isnt even funny! but I'm feeling about the same today.. sorry I'm not more cheery.. but boy this bites!

OMG! I am waving my white surrender flag do can you all see it??? I dont think I spelled mt title right.. it doesnt look right... I am having areally rough night.. or mornig I should say.. its nearly 4:30 am here.. and my pots is kicking my butt...I just havent been right now for quite some time.. and i'm very frustrated.. and dont feel goosd... I layed down around 2 am.. and haent been able to sleep..I'm having bad surges.. and some other weird things going on tonight..my hands are shaking so badly.. and my arms and legs feel so weak and heavy.. like I'm carrying around lead in my arms and legs.. and I keep getting these weird feeling in my legs like something is kicking me from inside out in the legs... my left leg is numb.. and wacky feeling.. not quite like it is sleeping but kinda like it... and the bone pain is kicking in full force too.. my ankle bones feel like i fractured them.. clear into my foot. and my wrist and hadn feels the same way...I'm having abd pots flare.. as well.. I started feeling terribly over heated the then thedizzyness started and faint feling began.. and next thing I know I'm the bathroom sick as all get out..(vomitting/diarrhea...nausea).. and my skin feels like it is on fire.. so very hot... and the apin in my guts get worse and more intense.. then I start to shake and have the chills.. and am cold to the bone...go from feeling like i'm on ire to feeing like i'm an feakin ice cube... I feel so crappy tonight.. my vision is all screwy.. and the pain in my feet is just unreal.. i have taken a Levsin for the tummy. and am debating on weather to take a vicodin to get me through till 6am.. but have my reservations on it b/c it causes such constiaption.. but what is the worse of 2 evils right?? I dont know they both suck big time... I just want to crawl in my potsy hole and stay there... I really hate living like this. and feeling so poorly all the time.. I sometimes wonder what my purpose is for living in such a crappy body that barely functions... Ok now i am waving a flag in each hand... though you really have to look b/c it hurts to lift my arms in the air.. will the suffering ever stop?? I feel liek such a burdon to those around me ... dizzgirl

hmmmm.. I did a search for the US and canada... canada does not sell Lunesta.... and my lord here in the US for 30tablets it is $200 bucks!! I was floored! WOW! i am wondering how a person on disabilty can realisticlaly afford to buy meds that arent covered under insurance.. that would be 1/3 of my monthly income... back tot he drawing board tomorrow I guess.... pharmacuetical companies are asking outrageous prices for medication!! I stupidly never fuly realized the cost of my Meds I take every month.. boy am i even more greatful for insurance of any kind at this point.. I know a freind of mine her insurance doesnt cover Pro amatine.. and to pay for it here in the US.. she'd end up paying like $700 a month for one perscriptioon! hse orers out of canada.. and gets the same script for $200!! Boy american drug companies are greedy little boogers!

Oh my bless that little girl... it just adds fuel to the burning fire growing inside of me that I so WANT to go to nursing school...wheni first considered nursing school.. I knew that i wanted to work with the kids.. be it sick kids or healthy kids.. Point blank I wan to work in the NICU.. with preemie babies... and I also thought that I'd like to go work for St. Jude's children Hospital or any childrens hospital... though I was not terminally ill as a child I was sick and in and out the hospital.. and I thnik that I would have something to offer these kids as well as there parents/family.. here i go again.. rambling tonight!