dizzygirl

pers-- I am sorry that you are feeling so badly!! and struggling so much.. I dont really have anyhting new towhat is already being said.. Just that I agree!! You are stronger them you may realize at times.. and it shows in your posts.. and tha fact that depsite how you are feeling girl! you are still going to classes!!! that is just so awesome!! and you deserve so much credit and respect for that.. your too are an inspiration persephone!! I read a wonderful book that I finished last night!! And in the bool the author kept saying HOLD ON HOLD on.. things will improve even if it is only in small ways, they will change.. so persephone HOLD ON HOLD ON!!! feel better Linda Sending you super big cyber bear hugs!!!!

wow thats goood!

Hi I use green olives..when I get really potsy feeling sometimes if I eat like 7-8 (or half the jar!!) green olives.. and then drink either water or gatorade.. it sometimes helps.. also I know that soup was mentioned too.. but if you make like the condensed campbells chicken noddle soup.. and dont really dilute it w/ water.. its more salty.. then add some salty cracker.. its a good salt fix.. also Ramen noodles.. cooked w/ 1 cup of water instead of too.. is very salty.. oh, and you can add a small packet of salt ( like those tiny ones you get from like McDonalds..) to you gaotorade.. and shake it up.. and chug it...taste salty though.. but helps..

Hello emily! I know how to crochet.. but I dont know how to knit.. perhaps if we ever cross paths.. we could teacher each other how to knit and how to crochet!!

Hi welcome!! sorry that you arent feeling well.. but glad that you found us... I have been diagnosed w/ POTS since I was 20 am now 23.. But have had some form of pots since well..birth! EEEEEEEEWWWWWWWWW!!

WOW! you recieved a rather not so nice message... we are suppose to support each other hear.. not make them feel bad for asking a question...

Hi welcome to the forum.. you should contact you doc about your salt tab doseage.. and write it down somehwere.. like you calendar or something.. where you can have easy access to look if you forget.. again welcome!

sorry that your tummy is still feeling yucky.. hope that you feel better soon

HAHAHAHA you guys are funny!! I ersonally like te idea of a teal stick person lying on their back...! HAHA! however the teal color is used for Uh..sexual assault awareness..or crime victims one of the 2.. purple is used for domestic violence awareness.. a nice blue would be nice to use.. how do we go about geting an "official color" for dsyautonomia? I'd be willing to help! Oh the word dysauotonomia.. when Dr. Grubb first told it too me I'm like what did you say? He broke the word down for me so that I could spell as well as say it!! all though at first i'd remeber the "DYS"--as dys mena bad or painful in medical terminology)...auto-- think of a car-- and onomia-- i cant remeber the refereence to that...

lauren.. hi.. I am glad that you got some "relief" .. that is good!

hey girl I was thinking o f you and wondering how your appointment at the docs went today.. hope that you are ffeing better

hey now that is very cool.... a doc signing up on the physicains list.. I hope that you guys in the UK find him helpful in treating you....

thanks guys!! And Emily.. my fellow Casper ghost.. we can be casper twins! I go see my cardiologist next week.. and I am going to talk to him about my plaeness. among other things!! WOW all I have done for the past 5-6 days is sleep sleep sleep! Last nigth I even slept thru my favorite show 7th Heaven!! now that is just sad! it was looking like a good one too!! But thanks for the pointers..

HI ya.. I have palps and PVC's all through out the day.. I cant really say how often i have then in a day.. ALOT! But like today I am still ahving them frequently.. but not as bad as yesterday.. I was hooked up to a 24 hour holter monitor yesterday and part of to day.. so I am interested to see what my strips show.. it think it will be intersting consdiering all the stuff I was "experiencing" yeesterday..

thank you kathy.. since I was born I have never been "easy to get IV's in or draw blood from.. I have had IV's inserted in my head.. (yes my head..) my feet.. my thumb and the back of my wrist in them teeny tiny veins.. boy I think that that one hurt the most.. during my last tilt test they tried like 7-8 time to get an IV in my.. and multiple nurses.. plus IV team.. finally in the thumb it went.. even ona good days.. not much luck.. oh my the world of dysautonomia su***!!

kathy P..' Hmmm. low blood volume huh?? When I was at the clevlenad clinic a few yrs. back.. they tried to do a blood volume test on me... and they tied for almost a hour to get a large enough vein for the needle so that they could do the test.. but could not do it.. b/c my veins bite.. is the any other way to get you blood volume checked? I know that I did a big NONO today.. I ate Burger King french fries.. i never eat fries really.. but I was tanding at the counter.. and I watched them dump the huge amount of salt on the fires.. and I'm like OMG!! I so need some of those salty little things!.. nee less to say the salt.. is my best friend...

Oh persephone.. I am sorry that it is the middle of the night and that those achy legs are keeping you awake!! I can relate to legs pain.. it freakin' stinks!.. the only thing that I have found that takes the egde off of the pain is toradol.. its an anti-inflammatory.. but you cant tkae it for more then 5 days at atime.. as it cause some GI issues i believe.. something w/ the tummy.. other then that...elavating your legs some that helps alittle too.. my pain will typically start in the middle of the night or late evening.. and will last for a few hours or a few days.. dpending on things.. also I have noticed that when it rains or snows.. and is damp outside that my leg pain is worse.. also if I spend to much time on my feet.. triggers it too.. did your scooter get fixed yet? i certainly hope tha they fixed it for you!!! I hope that you feel better perse.. hugs and sweet dreams Linda

wow nina.. i really hope that you start feeling better soon... you havent been feeling up to par for some time now... Is the any way that you could maybe take some vacation time from work or some kind of short medical leave for a wek or so?? to give your body alittle bit of recoop time? I hope that you pain meds help you tonight and that you are feeling better soon Nina.. hang in there.. its good to see you the boards tonight!!

Hi all.. I know that w/pots that you can have paleness.. well for months now actually.. I have been as white and pale as you can get.. I especially noticed it today.. as I was standing at the bathroom sink washing my hands.. and I hadnot ben feeling good at all today.. had a very early morning full of testing.. then got hooked up to a 24 hour monitor.. and came home.. well during the 45 minutes that it took for me to get home.. I had 2 near syncope spells.. and a spell of my legs collapsing as I was trying to get into the house before I totally passed out.. but my face gets so white.. as do my lips.. half the time you cant tell my lips apart from my face.. and my hands and feet are so ice cold.. and the rest feels like it is on fire... SO I am wondering what exactly causing this potsy thing to happen? My HR has skyrocketted up to over 200bpm.. multiple times to day.. I am curious to see what this monitor shows.. hopefully some explains and answers will be clarified.. casperthefriendlyghost

hey there lauren.. I feel like I am always adding a "me too" to alot of posts latley.. SO here it comes Me too!! my doc can tell just by looking at my stomach that I am having "GI distress"my stomach will get majorly distended.. and of course there is the pain and piking.. and well way too much pooping.. or no poopping at all..right now I am going through a work up as last week.. things were not looking so great.. or sound to great..(meaning when the doc/ listened to my guts.. she didnt like what she heard...) Sorry that you cant find a comfy position.. I see that you are going to the doc tomorrow.. that is good.. have things checked out to make sure that nothing serious is going on.. um to help you poo.. you could try drinking prune juice or eating like raisins or something.. its a natural. I realize that prune juice isnt real tasty.. but if you want to avoid more meds.. that is if it is constipation...just a thought.. I know that my goddaughter has a terrible time pooping.. and she gets belly aches..(she is only 3yrs old).. so beck makes her drink and eat prunes and rainins and stuff to help it along.. I"m not sure what else to say.. um good luck tomorrow I hope that all goes well for you.. and aht you get some help..and some relief!!

good lcuk hayley.. i hope all goes well and that you get some help and treatment as well as answers..

HMMMM.. Iactually seen that show on discovery.. though I cant remember what was wrong with the baby though... but I remeber that the women .. and the man... I had never even heard of the word dysautonomia before I seen DR. Grubb in 2003... though I found out 5- months prior that i had something called POTS.. but had never heard of that either!! and even though i got the dx.. nobody explained it to me.. just handed me pills.. needless to say I have gotten much sicker since 2003.. I really hope that in time DYsautonomia gets the attention that it needs.. (hopefully sooner the later..).. and I think that once dysautonomis becomes a more know condition.. that we will start to see that alot more people have it.. just my 2 cents worth..

wow! that is amazing!

YEAH!! I am so glad that you had a successful trip!

LOL!! Emily... yeah I know whatchya mean..my dresser is full of pj's.. LOL! I am now on the hunt for a really warm and soft/fuzzy bathrobe! LUXURY! today I am quite mismatched in my pj's.. mightgown w/purple and green frogs on it and b/c i got freezing cold.. I added a pair of pink plaid pj bottoms and a pair of regular socks then a pair of heavy heavy socks.. b/c I cant warm my feet up! big surprise huh?