dizzygirl

hey folks just wanted to drop a quick note and let you all know that i am being admitted to the hospital for a few days... I've beeen feeling really really bad recently.. and i have multiple infection zipping thru my body... (which is causing me to feel ughier then i normally feel).. so really early tomorrow morning i will be going in for a few days.. and hopefully ( i really hope) that i feel better... and be in less pain.. and everyhting take care all dizz

hmm you raise some very interesting questions.. none of which i have an answer to by the way.. but my thought on third world countries.. and i really hope that i dont sound like i'm stereotyping here.. as i'm not intending too... but these countries are typically pretty poor and under developed... i would imagine that there are people there who have pots.. but unfortunatly are unable to get medical treatment..i know that there is medical aide and stuff like that... but look at how (still) uneducated a large majority of doctors are in the united states.. and we are a powerful country.. if would by my thought.. that these people in poorer countries are misdiagnosed or just simple not diagnosedat all... i think that there are alot more people thru the world with pots.. and not enough doctors to recgonize it.. and yeah i think there is an enviormental/chemical compentent to some cases as well..

oh my.. i hope that its not shingles.. and that whatever it that you feel better soon dear!

i was given a script for a muscle relaxer SOMA.. to help try and treat my unrelnting pain issues...(lots of really bad hip pain..causing the muscles to spasm badly..ouchies) I am allergic to so many narcotic meds that the doc thought to try miuscle relaxers instead and pray that i dont have a reaction.. we went with soma b/c i was on it in 2001..(along with multiple other muscle/pain meds) about 6 months prior to the totally meltdown in 2002.. I was on it about a 10 months or so.. and i dont really remember if it helped or not.. my old pcp would not give me muscle relaxers b/c of my pots.. and i wondring of your guys opinion on the matter... my current pcp said that there is always a chance that it wil interact w/ things.. as my system is so overly sensitive... thanks

melissa glad that you arent running a feer right now!! that is an improvement! I'm glad that you are feeling a bit better as well.. you hang (or swim i should say) in there melissa BIG HUGS

susan i am on clonidine the pill form right now.. and i have never been told tot ake it only as needed.. i take it twice a day.. and then am able to take an extra bb on top of my daily amount if i get into a crazy tachy mode.. i also was on clonidine the patch form.. and i wore that daily.. and that to was an all the time thing.. dr.grubb has given me all of my clonidine scripts..(it does help by the way if taken right.. at least for me it does).. i was never told to take it only as needed.. did you doc by chance talk to you about a safe BP for you to be able to take your clonidine? on top of your bb your allready on? I know last fall when i went on the pill fomr of clonidine i was instructed NOT to take my clonidine if my pressure was lower then 120/70.. those are my guidleines.. is this your pots doc? do you have an ans specialist you can talk to? just tobe on the safe side dear?? good luck...

ernie dear. i know that you need this doctor.. but he was being unreasonable.. is there anychance that you can talk to him and really drive it home that you cant play god and control your syncope.. especially when they are making you do things that will trigger.. i think that you made it clear to him that you are willing and did follow his guidelines as best that you could .. and to give you a bit of leeway or something... there are some docs who have brilliant minds and can do possibly great things for you.. but geeze louise! they (he) ernie needs some etiquette courses in snesitivity and compasion.. and bedside manners 1on1! hang in there ernie dear you are a real trooper! BIG hugs dizz

yeah jacquie i get that.. it is an overwhelming feeling and urge that i must lay down right away.. or i will just drop right there not sure if faint wise or strong incredibly uncontrollable urge to sleep.. i know if i fight that it makes it worse... and my legs will feel like lead if i try to walk... and i will be unable to walk a straight right ( not that i could do that on a good day anyways...lol.. ).. but i often find when i get like that that i seriously bounce off the wall.. if the wall werent there.. id be on the floor.. i dont want to say give in to the whatever your are feeling.. but if it goes away after laying down for a while or sleeping.. sleep or lay down.. hope that you feel better girl! hugs linda

amy that is great news!! congradulations!! best wishes to you and your family on a safe and healthy pregnancy and delivery! hugs~!

carolyn.. I'm from erie pa too!! I can think of about 6-7 people off the top of my head from the small town that i grew up in (fairview) who i would bet money that have dysautonomia of some kind.. and i can think of about 5 more people from NY where i lived for 5 years.. who also again i would bet money that they have dysutonomia of some sort.. and the town i'm thinking of is only about an hour awau from erie.. I'm not from Ohio.. but i spent summer and vacations with my gramma visiting my great grandfater in martin fairies/mingo junction Ohio...i was a child from a little tyke to about 8-10 years old.. few times a year to see pappy! but as im sure you know fairview has lot of farms and stuff on the outskirts of town.. i grew up across the street from huge farm field.. and right next door to a neighbore lady who had a small farm with some chickend early on cows.. then horses. and a tons of furry kitties.. and dogs.. there was a pasture like right next to our yard.. where the horses ran... my thoughts and my point actuallly i wonder about lyme disease..(ontop of something genetic with pots) and chemical exposure as welll..about 6-7 people with in a few mile radious. makes ya wonder..makes me wonder i should say! what part of erie are you from?

hey there buggy mouse! Now these kind of butterfly looking critters i like!!! kind of neat.. wow you have a wide assortment of critters in your garden!! how cool!.. I like how the dragonfly was looking right at you in the one pic.. LOL very cool!

godbless you both.. your both still in my prayers.. i hope that this works for jeff.. big hugs dizz

WOW Persephone!! You GO GIRL!! my goodness that is beautiful!! How incredible that you have this oppertunity to be at oxford..its awesome!! Proud of you Persephone!! big hugs dizz

hi the lowest they've gotten my bp at is 45/23 and the highest being 195/145.. i've had no bottom number more then once.. i agree that it will depend on how you are feeling with varying bp's.. how symptomatic that you are.. I've had bp's of 60/40 and i would still be talking.. not feeling real hot but still talking. other time my bp can be "normal" but i feel horrible.. i've found that if you can chart your bp.. and pulse too.. and by doing that see when you feel your best.. see where your pressure is at. for me personally i feel best if my bp is about 100/68.. right on the nose if it is higher or lower then that i feel cruddy. same with pulse rates.. i've found that me a pulse running better 70-77 is perfect.. again any higher or lower.. causes yuckiness.. it would be good to talk to your do maybe about a med to stablize your bp.. raise it or lower it whatever needs to be done... midrine and florinef. and mestinon.. are drugs used to help raise bp. good lcuk to you

hey i forgot about hotwire.com! thanks nina. I found one or two hotels on line that i'm going to call about...I am so amazed at the cost of some of the hotel rooms out there.. i did a check on one for a 3 night stay and it was like over 1200$ for 3 nights I was LIKE WOW!! that is 2 months of ssdi! lol lauren i'm glad that ive gotten an appointment as well.. i have another question for you all.. anyone know of some good tourist spots on long island? i will have the evening free and if i can find the energy i'd like to check things out.. lol thanks

hey.. i will be going to the chairi insitute with in the next few months.. and i need to reserve a hotel room just incase the variety house is full.. I'm wondering if any of you New Yorkers or people who have been to tci know of a nice decent hotel that has shuttle service and is under $100 bucks a night.. i have a list that i was sent but they are outrageously priced.. I dont drive so it would need to either be close by tci or if will need shuttle service... any input or pointers would be greatly appreciated thanks dizz

im so so sorry that you had to deal with such a wiennie!!! i do hope that you find a knowledgeable doctor soon!!! good luck dear big hugs linda

i was on lyrica for a short time and at first i didnt notice a bad or good reaction either way.. but about a week into it i started breaking out in a rash... i hope that it helps you.. i was on it for severe leg pain of an unknown origin... good luck to you.. and yes it is a newer drug out.

just alittle FYI-- he feeling of everything moving has let up a bit.. its not quite as bad.. i cant say that i feel loads better .. but alittle bit is good.. I'm no longer seeing the cat all greeen when i wake up and the floor is not swirling anymore!! thank god for small favors! the antibiotics are knocking me thru a loop.. i will be on them for a few more weeks.. but will be getting a few IV sesions also.. so that is good!

well at this point i know i have something on my pituitary gland and my pineal gland.. one doc told me it was a cyst and recently i was told by a totally different doc that it was an adenoma.. so at this point for me the jury is still out.. but i'm hoping that i will have some concrete answers soon.. I do have hormonal/endocrine things going on.. so i think that it is affecting me.. I however do not know if there is a link to dysautonomia or not.. or vise versa.. i do not know if one is feedding off the other kind of thing.. i'l let you know if i find anything out.. good luck to you

if i am close to home to try to stay walking and get home quickly.. or as quickly as my body will allow.. and if i'm not i will sit right down .. dont care if it on the sidewalk or in the dirt... b/c sometimes.. you just have too.. and yes carrying water is a must... if i get to the point that i cant go on i call for a ride or call a cab or something..and i sit and find that i rock back and forth.. for some reason it helps keep me from going totally under..

oh my... feel better nina!

WOW!!!!!!!!!!!!! miss sunnyfish.. you most certainly have alot of crudd on your plate.. I'm sure that you've heard this a billion and 1 times.. now for the billion and 2 times.. but i'm so sorry that you are dealing with all of this.. and i really hope that they get things under control for you soon.. and that you start feeling better dear... hang in there.. oh yeah.. about that resident doc.. what a weennie!!! want me to call my brother??? LOL.... te he....i would seriously think about filing a complaint or something.. that is horrible.. you hang in there dear and i hope that you get to sleep in the comforts of your own fish bowl more then at the "dirty" fishbowl.. big hugs dizz

yes i did call my doc before i posted here...am going to go get some iv fluids.. and see if that doesnt help me feel better.. will update when i feeling better.. and lulu -- girl you are too funny!

OMG!! folks i am going to go insane here soon if the unrelenting feeling that i am moving does not stop...the walls are moving.. and look like they are shaking.. and the floor OMG!! i made the mistake of looking down at the floor (felt like the floor was going to disappear under my feet..SO NOT cool!) and the floor looks like it was swirling around beneath my feet..and right before i had woekn rfom a nap.. and the cat was sleeping on me.. and i woke up and everything looked really werid.. and everything was green!! i seriously my vision was so wacked out that everything looked green.. even the kitty!! I actually said peaches (that is the cat) what did you get into? and why are you all green.. and why is my blanket all green too?? Seriuosly is that a normal thing with vertigo?? i am not crazy.. but at that moment i thought i was startch raving mad! a cat who was green.. OMG! good by germit the frog hello green 4 legged meow meow~! i went to the doc on monday and i had a bad ear infection.. and i've been on antibiotics since monday... and today i woke up and holy crap i feel like i am trapped in the middle of that tilt a whirl ride (like at a carvival or something) and i cant get off of it.. i'm soo unsteady on my feet.. and unbalanced that i've had to use my gosh darn whelchair all the time.. any pointers on how to get "my world" (lol) to stop spinning.. b/c if i puke on more time or fall back wards and faint on more time to day or this week I' m seriously going to scream... and pull my hair out...and the chills and shaking i dont know what is worse.. being freezing cold in 90 degree weather and buried under about7 heavy winter blankets and wearing pjs with the ac off.. or feeling like i'm trapped in a constant spinn cycle.. HELP!!