dizzygirl

12string... I just dont understand the post in generally..I guess for part that it is outside of my thought process.. and ability to comprehend what you mean... I by no means am a stupid person...i just dont understand.. thru prior posting on the forum and my own digging on the vandy astraunt thing...I was able to speak with my doc about doing the DNA test to check for the NET thing.. and am hoping that it will offer some insight into the cause of my pots.. I stongly feel taht there is genetic links in my case.. as well as many other people on this board..and am trying to find the link.. I also think that there is a common connection for all people with dysuatonomia.. it just hasnt been found yet...there is so much that is not yet understood in dysautonomia.. as well as other illness..the body is complex... I think that it is good to look outside the box .. w/o people doctor/scientist/and researchers to look outside the box..we would still be in the stone-ages.. so just b/c I dont understand what you are referring too..doesnt mean that somebody else wont.. so kepp you mind open and outside of the box!!

dayna I hada spinal done On easter sunday of all days in 2002.. I had been sent to a larger hospital over 2 hours away in Buffalo NY. for an emergency neuro consult.. and considering the things that were going on (severe migraine--dehydration--) I had a BP of 195/145 and apulse soaring in the 200 range.. they felt a spinal was needed to check for menningitis and other things.. the spinal tap was negative.. i had the tap done before I knew i had pots.. anything is worth a shot if it will provide answers to you and ofer a possible treatment to make you feel better. hang in there dayna!

yeah I did ask the other day if my meds could be casuing my heart to beat irregular.. and I was told No.. that BB's typicaly are suppose to help with that!! I'm like well welcome to my body.. it doesntreact to anything normally! LOL

wow I ddint know that this was potsy thing either!! makes ense though I gueess.. when I was about 14-15 my eyes started dialating. and my mom would always wonder why they'd do that.. as she would watch them do it.. especially when I wasnt feelingwell..it would really freak my mom out.. I too am extremely light sensitive.. I keep the shades down on the windows during the day. and the lights off too.. ( no I'm not a hermit..LOL).. but i cant handle light during the day it really messes with me.. and if i have to go outside.. even on gloomy days I wear the darkest sunglasses that I can possibly find.. ironically enough both my parents are the same way with light.. my mom more so with natural lighting.. and my father.. is the lightbulb man.. he keeps the house dimmly light as lightbulbs bother him..

hmm I am allready on BB's maybe i need to up the doses?? or add another too the mix of what I allready am taking???

I must say that i am very confused about this post.. it is just way over my head.. think i can blame it on POTS?? lol But thru reading thru all the responses I have pulled out bits of info that I find interesting... morgan&sophia.. I think that you guys are refferring to the same article???.. if so I read it when sophia posted the link.. and found it to be very interesting and printed it off and took it to my PCP.. and after she researched it.. she has agreed to run the blood test on me!! after the next "spell" I have I have to go on the diet they speak of for 3 days then get blood drawn.. I am hoping that we hit on something that will help!! about the kennedy space center.. I too would like to know what they are doing there to help the astraunts recover from the orthostatic stuff.. maybe it could help us civilians..

jacquie--yeah.. checking your BP while laying down might be a good idea.. My BP drops low while laying down..it drops in any position really.. but it s worht a shot to se if there is a correlation going on there hope you feel better soon

if it is the dye that you are allergic too.. they do make dye free benadryl.. inreagrad to peculiar sumptoms.. shoot they all are!!!!!!!.. but I think that feeling like i have electricty running thru my body.. you know that one really takes the cake.. and makes me feel so icky

there is that potassium again! LOL --i think your right morgan! thanks gals..I am allready on BB's I take betaxolol 20mg 2times aday..betaxolol is a stronger form of propranolol and 20mgmgs of betaxolol is equivalent to 90mg of propranolol 4times aday.. which was the doseage of propranolol that i was on before switiching to betaxolol.. the betaxolol works alot better then then the propranolol did for me.. it keeps my Hr out of the 200-240 range.. but it still gets up there to about 170.. I also take clonidine.. so yeah I think that it is time to callthe cardio guy ....

I was told about 2 yrs back that i have hyperadrengic pots.. and experience what you talk about.. I take clonidine to help the surges and such ..as i tend to get them at night.. so i take the clonidine before bed..per Dr. g.. it helps w/ the hyperadrengics

Hi folks I am wondering for a few months Now I have been having alot MORE problems then usual w/ irregular heartbeats.. that lasted anywhere from a few minutes to hours if not days.. and that was a regualr occurance for me.. and I just dealt with it.. well I'm posting b/c my irregular heartbeating has been non-stop for about 6wks or so.. everytime some one listens to my heart it is irregular.. my nurse told me yesterday.. that she thinks that it is part of my pots..she said that it goes up and down just like that.. I have in the past had a hisotry of "strings" of PVC's and SVT episodes.. I'm just curious if any body else has irregular beats that last so long? and if it is apots thing? thanks

Lauren Hi.. you are a sweetie.. I got a cardfrom you yesterday I think.. and it was very sweet! made me cry.. in a good way.. I wish that the medical community would listen to me.. when I tell them what helps me.. and I falt out told them that 500cc of fluid jst wasnt going to cut it.. last month when I was in the hospital they gave me about 10 1/2 bags over about 3 days.. and even though I was so very sick.. and couldnt like move hardly at all.. once I was able to move about and eat alittle I felt TONS better! and felt decent for about 5 days.. and was hafl functional!! BUt..I am hoping to get the guru of pots to help me with this asap.. so I hope that things start looking up soon!! sorry to keep posting depressing posts.. thank-you guys for being there! I appreciate it..

(((((SIGH)))))))) BOOOO the IV fluid didnt last as long as I hoped that ti would! though I had a few hours of feeling ok.. and I was able to actually eat during that time w/o getting sicker then a dog! I started to crash around 1am.. and was zonked out from 4am till after 6pm this evening.. I was up long enough to let the Lab tech in to draw my blood.. and I couldnt even sit up!! I attempted to check my pulse and BP.. and my pulse is/was like unfindable.. and the Bp cuff machine thingy kept reading error!! so I never did get a reading... this makes me feel so sad.. It amazes me that something so simple offer relief for me.. and there are restriction put on it! how can these insurnace companies live with them selves or sleep at night knowing that they are in a word "causing complete and utter" misery and distress for people!! Just really fyr's my glutious!! (rear-end!) I hate the feeling that comes over me before I have a paralysis epsiode.. it is horrible.. and there is nothing right now that i can do to make it stop!! OHHHHHHH I want to SCREAM!!! if i had the strength to scream i would! I hate no being able to eat or drink anything.. and going for days without being able to do so.. even teenytiny sips of fluid make me puke or wanna puke.. and I'm so tired of people telling that i have to force myself to eat and drink.. you know dont you think I know that?? I'm not stupid.. If I could swallow with out choking on my food and liquid.. I would!! and if I had an appetite or even a slight interest in food I WOULD!! and if it didnt cause me such pain.. I would.. and poeple are so rude about it too.. I'm like try to imagine waht it is like to have the flu..a heart attack..an astma attack..and a migraine all at the same time.. and you tell me how gun-ho you would be about wanting to eat or drink! if you had just the flu or a migrain you would be like H*LL NO!! And I am tired of trying to defend myself for the reason why I need IV's.. and all the stupid azz questions that come along with it!!.. and trying to explain that POTS.. you know your body just does not work as a body that doesnt have pots would.. but it is like SERIOUSLY over peoples heads.. its like they look at you like you are speaking a foreign launguage or that you have 4eyes and are green and have Horns growing out your head and a tail growing out your butt! GRRRRRRRRRRRRRRRRRRrr god!!!!!!!!!!!!!!! UGH I feel so icky.. back to the couch I go..sorry for the vent.. but I am SOOOOOOO ________fill in bad word here... averydizzycantbeverticleand am horizontleinsteaddizzygirl!

OMG Morgan!! WOW!! I am glad that your doctor believes you!! and that you are getting a chair.. my goodness .. god bless you morgan...I hope that you get relief from pain pills.. CYBER Hugs to you.. (those wont hurt you!!)

Hi folks! I did get alittle bit of an IV today.. the dco only ordered 500cc to be infused.. ..I was like what! after all the hassel and fight to get it and I dont get the full bag!! But none the less i did get the 1/2 a bad.. here at home.. they said that for now this is only a one time thing.. and then will go from there.. So i did get 500cc run thru at a time frame of about 4 hours.. and it did help alittle bit.. I do feel less dizzy.. then i did before the IV started.. Now had they given me 2 bags like I asked for I probably would be feeling LOts and LOTS better!! my pain level is starting to go dwon on its own..I am afraid to take any pain pills.. as I had an allergic reaction to an anti-inflammatory the other day.. and just am not up to trying yet another med. and having another allergic reaction to it!! I think I developing some anxiety in reagrds to mediations.. I have an allergic reaction to so many meds!! that i dont even want to mess with new stuff!! But.. yes the 500cc(1/2 of 1liter) that i got did help..some.. I am hoping tha after my labs come back that I can get some more fluids.. my doc is being cautious. which I understand.. but I have been feeling so badly that I am not in the most understanding mood these days... I did talk with the nurse who put my IV in and she said that maybe if the Iv's really help.. that maybe I could get a pump here at home.. and could get hooked up as needed.. and learn how to operate the IV pump.. and unhook myself fro the IV's.. so that was some interesting bits of info!! It ws nice to be hooked up to fluids herea t home.. where i could lay on my own couch and stare at my own tv.. and wear my PJ's.. and not feel "weird" or have to constently explain why i needed IV fluids..! lovely perks of home!! But it is nice to be able to sit up for a few minutes and not fel instatnly symptomatic.. and the dizzyness has decreased.. They doc only oirder the supplies as a one time thing... so I am going to have to light some fires under some "booties".. so that i can get what I need.. and keep it and not have to continuously fight for what I should not have to fight for..!! But I'mm am happy with the lmprovement from the 1/2 bag and cant wait to see what 2 bags will do for me!! averticle not quite so dizzy-dizzygirl!!

Hi folks! I did get alittle bit of an IV today.. the dco only ordered 500cc to be infused.. ..I waslike what! after all the hassel and fight to get it and I dont get the full bag!! But none the less i did get the 1/2 a bad.. here at home.. they said that for now this is only a one time thing.. and then will go from there.. So idid get 500cc run thru at a time frame of about 4 hours.. and it did help alittle bit.. I do feel less dizzy.. then i did before the IV started.. Now had they given me 2 bags like I asked for I probably would be feeling LOts and LOTS better!! my pain level is starting to go dwon on its own..I am afraid to take any pain pills.. as I had an allergic reaction to an anti-inflammatory the other day.. and just am not up to trying yet another med. and having another allergic reaction to it!! I think I developing some anxiety in reagrds to mediations.. I have an allergic reaction to so many meds!! that i dont even want to mess with new stuff!! But.. yes the 500cc(1/2 of 1liter) that i got did help..some.. I am hoping tha after my labs come back that I can get some more fluids.. my doc is being cautious. whci I understand.. but I have been feeling so badly that I am not in the most understanding mood these days... I did talk with the nurse who put my IV in and she said that maybe if the I's realy help.. that maybe I could get a pump herea t home.. and could get hooked up as needed.. and learn how to operate the IV pump.. and unhook myself fro the IV's.. so that was some interesting bits of info!! It ws nice to be hooked up to fluids herea t home.. where i could lay on my own couch and stare at my own tv.. and wear my PJ's.. and not feel "weird" or have to constently explain why i needed IV fluids..! lovely perks of home!!

Vanessa-I am happy for you!! I am so very glad that you got in!! I realy hope that they can offer you some insight and help for your individual case!! god bless you! and take it easy!! is somebody going with you to vandy?? I'd hate to see you make that long trip alone!! BIG HUGS!! Linda

hey all ! thanks for the input! I was just wondering if anybody else wondered about a correlation in premature births and dysautonomia.. I know that while I dont think that it is the SOLE cause for my POTS... but do believe that it did play a part however or whatever that part may be... causing the body to not be able to fight off infections and virus as well a healthy kids my age...specialist told my parents over and over that i was just going to be a very sick child.. and that there was nothing that they could do to prevent it..(in the early 80's)..YEAH! a sick child with POTS! I feel that there is are many factors involved in me personally having pots.. enviromental and genetic..(i am most certain that my mom and grandmother have some form of dysautonomia).. as well as factors that have yet to be determined!! itruly believe taht I was born this way.. and that this for whatever reason is the way things are suppose to be for me..why i dont know..but these are the cards I was dealt.. trying to find a way to put my ducks in arow i suppose.. i was just thinking last nigth as I layed on the couch unable to sleep.. and thought I'd ask what you all thought.. I am trying to find the "link" so to speak.. thanks guys!! and julie.. yes maybe alittle peak.. a little slither of light peering thru!

I am wondering tonight about something. DO any of you think (weather or not your where full term or premature) that premature births can have an effect on dysuatonomia?? I want to clarify that I'm not saying that if you are born early that you are going to have pots or something.. I am just wondering for my own research/curiousity.. I ask b/c I was a premature birth..I was born at just about 26 wks gestation (3 1/2 months early).. and I was so very small ( 1lb and 5 oz.. and 12 inches long..) and had SO many problems thru-out life in general with health...and a very rough start to say the least.. it is believe that I was born with pots.. and have well had it since infancy..I have also had tachycardia since infancy.. so i am curious if any one has thought this too.. or are now POTSY and was born early or had trauma/diffficulty at birth/delivery??

Sue.. I hope that your niece Quynn gets better very soon!! she sounds like such a sweetie!! My prayers are with you and you niece/family.. HUGS linda

Um.. I dont have any experience with zelnorm.. only that my doc will not give it to me B/C of my pots.. doc feels it will make my potsy things worse...(for me pers.) but maybe it wont effect you badly.. and it will help you...I hope it will..tummy aches are not fun by any stretch.. I hope that you feel better soon Nina.. and I am so very sorry that you still have a freggin' headach/migraine. that is horrible! take care dear! HUGS Linda

Jacquie--so sorry that you feel pukey!! I have the same problem regardless of how I take my meds or what I eat or drink.. I am alsways feeling pukey and having gut pain.. its been chalked up to POTS for now. until I am finally able to finish up my testing on my tummy.. have you tried any perscription stuff for mausea? like tigan or um shoot that is the only one I can think of off the top of my head.. sory.. cant think today!! or talk clearly!! LOL.. Oh compasazine? I really hope that you stop feeling icky soon... this sounds kinda goofy.. but try laying on your right side when you feel nausea hitting.. it sometimes can help w/ it.. atleast it does alittlebit for me.. I dont know why it does.. but it does..

Well I had another bad bad epsiode with passing out and full paralysis.. YUCKY YUCK!! so once I finally could move and speak I called the doc and told that I must have IV fluids.. and low and behold the agency that carries the supplies called and told me that my nurse/ or a nurse will be here tomorrow morning before Noon to hook me up. I was like YEAH!! finally I have only needs IV fluids for the past 2 weeks! no wonder I feel horrid! I still feel like poo tonight.. but atleast have some possible relief in sight for a few hours tomorrow!!.. that is enough to put smile on my cold painful body.. that doesnt like me anymore!! Nice combo painpills and Iv fluid! what more could girl ask for! LOL kidding ..kinda thought I'd share my news with you.. sene you all have been so good at listening to me in mytime of "need" or physical and emotional meltdown! ahopetobefeelingbetterbythistimetomorrowdizzygirl!

I take clonidine and mestinon together.. Um the way it was explained to me w/ using 2 drugs one to raise and one to lower is that the BP meets in the midle and you get stable BP's.. clonidine does lower you BP.. keep an eye on it.. and check with your doc if it gets to low and is causing you problems...your body needs time to adjust to the med..or maybe you can try a lower dose of it too. I'm so very glad that it helped you feel better!! that is great!

Morgan.. I am gald that you finally are getting an app. w/your PCP.. can you take your hubby along with you?? that whay if your not feeling up to nonesense that you hubs can talk to your doc about the much need for a hweelchair.. a power one.. preverablly! and one tha reclines back fully and has a foot thingy that comes up to prop the feet up when you are reclined.. and medicaid and medicare paid for mine..(it was before the changes at the first of the yr.. not sure diff. it will be now).. so dont let him pull the cr%p that insurance wont pay for something like that..Morgan.. you will most likely have to go thru a PT eval.. and provide medical documentation that you just arent physcially able to handle a manual chair.. which shouldnt be to terribly hard.. I wish that I was closer to you!! I would help you with this..I know that you are tired of fighting.. but you do deserve this help morgan!! anywho.. hope that things work out for you morgan. I really do! BIG HUGS TO YOU!