dizzygirl

Julie--soory that you are feeling icky!!!!!!!! Just wanted to let you know that I'm thinking of you.. and hope that your BP issues get taken more seriously in the future... and that you start feeling better!! Most insurance will cover all or most of the cost for compression hose.. just get a script from your doc and take it to a um medical supply store.. like here we have great lakes.. I know retail mines cost about 100$.. Hang in there Julie dear.. and feel better soon.. call me if you need too.. hugs dizz

Hi folks I realized that i said i would post about my other concern and in true potsy fashion I forgot too! lol ANyways part of my troubles the past week or so.. I poassed out last sunday night going into monday morning.. and i felt something pop in my neck.. and then this familiar feeling of electricty start to just surge thru my body.. and I started to feel like I was floating and moving spinning at the same time.. well after that i passed out.. and once i came to.. I felt horrible.. I must say one of the worst times that i have felt after passing out.... a few hours later i had to get up to go to the hospital for my IV.. and I just got worse as the day went on.. the pain w/in my bones was so bad that i buzzed the nurse and asked her to call my cardio for some pain meds.. I had such intense squeezing in my brain and in the back of my head.. my head felt like it was going to implode.. sso an hour or so later they brought me a pain pill.. i took it.. (it didnt help to much..) but also during the day I started to feel fuzzy from head to toe... just really out of it.. and then along with the fuzzyness.. I felt numb from the inside out... a really terrible feeling.. and it felt like my organs where in competion with each other to see which one could shake and jump the longest and hardest.... I had some serious issues with my vision more so then the ususal potsy visual things... I told a fellow potsy.. that i imagine this must be what a person tripping out on drugs must feel.. let me feel ya it was unreal..(sidenote.. I've never taken drugs by the way... i was making a joke).. but ti was very scary in combo with the vision stuff.. and feelling numb from the inside out.. and the squeezing in my brain... UGH.. I literaaly felt as though I was dying and that my body was shutting down.... I felt like i was floating almost.. and the pain thru out my body was intense and I wa like this for darn near a week!,, pretty much unmoveable.. I thankly have some fantastic friend who puled thru for me.. and helped me thru the week.. I did go to the ER but it was a terrible disappoint.. and insulting waste of my time.. and ending in me sobbing b/c the ER doc wouldnt take me seriously.... and was straight up a ding bat.. i dont know where he got him medical license from but it really scares where some of the doctors are coming from... I dont really loose my composure in from of a medical oprovider..b/c they can take it as you being hysterical or depressed or some monkey business like that.. but i was feeling so bad.. and i truly felt like i was dying.. and i ned some help.. and this guy just stomped on all hope and everything... i started to realy bawl my eyes out and he left the room.... and before i left the nurse came in and asked me if I felt suicidal!! I got rude and told her no I dont feel "suicidal" I feel like I am dying.. and your asking me if I feel suiciidal!!" she said well i have to ask b/c you said you felt like dying.. i had to make sure that you didnt want to kill your self... and she was like I realize that you said that b/c you arent feeling well. WHATEVER!!!!!!!!!!!!! in the mean time I had started to cry again... But do any of you guys ever feel fuzzy from head to toe? and numb from the inside out? and pretty much like you are going to croak?.. there is more involved in things but i dont know how to describe them... only that it lasted for days.. and is starting up again.. on my way to the pcp now.. take care all.. dizz

HEHEHEHEHHEHE!! JULIE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! you are to funny!! thanks guys for your cheering me on.. lord knows I could use it right about now.. I am feeling alittle bit better.. I was able to sit up for a while today w/o having the incredible yurge to pass out.. or feeling like I am moving around.. floating around is a more acccurate discription!! I'm greatfull that the feeling that I was going to die finally subsided.. that was quite scary... I will post seperately about that one.... But just wanted to pop in and say hey.. take care all.. hope that my post finds you all well.. or as well as can be expected... Hugs linda

Hi folks I just wanted to drop you all a quick line to say hi.. and that I've missed you all and been thinking of you!! I'm having an unbelieveably hard time w/ pots...(though I'm not convinced that it pots causing soe of the things that are happening to me).... I'm waiting on my med records being mailed to me.. and fighting with the insurance company to cover out of state care... (insurance companys are SOOOOOOOOOOOOOOOOOOOOOOOO MEAN!!) I'm applying to Vanderbilt and I'm in the midst of setting up to be seen at The chiari Institute... I really feel at this point that my "docs" just have done all that they can do.. (some) all they are willing to do .. or have accessablity to do.. and that I need to look further into a larger hospital that has way more resources.. and can do some diggging into the real roote of my problem... But I just wanted to pop in and say hey !! love and miss ya all... I'll pop back in when I'm feeling better and catch up on posts and stuff love dizz

i folks.. I am wondering since pots effect autonomic functioning.. can it effect the pancrease (SP?????).. i ask for a few reasons.. I did a search and couldnt find much on the pancrease being effected.. And my thoughts about it being.. that in 2002.. when i got really really symptomatic w/ pots.. i began having blood sugar elevations... and they thought I was having beginning signs of diabetes.. 4 yrs ago.. NOTE: i've have pots my whole life.. and never had sugar problems till the last few years... AFTER my pots became severe...) Well in the ER when my BP was 195 over 100 something and my heart was dancing in the 170-200 range.. I remembered that my labs came back that my sugars where elevated and my potassium was low.. so they folllowed up on it at home.w/ fasting blood test and stuff.. and my sugar levels had returned to normal.. and stayed in the normal range.. 6 months later.. they were slightly elevated again.. then for the next 3 yrs they were fine.. in normal range.. well with in the past year.. as my POTS has grown increasingly worse.. my blood sugar are all over the map!!!!!! and I'm wondering if I have actually diabetes.. or if pots is effecting my pancrease/insulin output.. and is mimicking diabetes..b/c I have a great deal of other wacky hormonal things going to too.. and during a lengthy hospital stay a few years back an endocrinologist tested me for diabetes (2004) and it was negative...and its been monitored and tested ALOT over the past 4 years... and when my pots is at it worst.. my sugars go up.. thenn will return to normal till the next really really bad tachy spell or pass out or something.. Also a friend of mine spoke with a doc in texas.. who told her that "SOMETIMES" dysautonomia can affect the pancrease.. So here I have been thinking about that.. and thinking back on the rollercoast I;ve been running on in the past few weeks alone with pots.. I've had 20+ passing out/paralysis and or both epsidoes in the past few weeks.. and its been terrible on my body.. well my sugar levels have been with in a normal range.. the other night.. I was severe symptomatic... and tried to jot down some notes on how i was feeling.. and I checked my sugar and it was high (206) 206 is high.. I realize not severely high like a majorly diabetic person.. but high enough to make me feel like poop!.. and I seriously felt like I was going to die.. I had the whole about to float out of my body and everythin going on.. so not cool!! I remember trying to drink some water and went to bed.. and since then my sugar levels have returned to normal (about90-105) SO I've got my thinking cap on ... and am wondering if you folks have any insight on this.. or know if the pancrease is effected by dysuatonomia.. its not that I'm in a denial about diabetes... i just have my doubts if its true diabtetes or somehow pots related.. know what i mean?

Hi BEE!! Yeah I am going to rpint off some information about pots and the digestion stuff and take a brochure.. and hand dilver it to his office.. after all its only 1 block from my appartment! I can "wheel" over.. LOL--and gastro paresis--shoot..scan my tummy on a day when I doubled over in pain.. and am broken out in a sweat and have the chills and tachycardia!!!!!!! HELLO! geesh! But yeah what I was told is just play old STUPID and IGNORANT!!!!!!!.. that best doc in the world mmmy money is on that doc for honesty and reliability!! that is for sure! Yes I made it thru yesterday--- I was dopey all day.. I decided that I'm going to call vandy today.. and see if i cant get a clinic appoint w/ robertson.. and go from there... WISH ME LUCK!! I'm soorry that you chest pain is back are you throwing pvc's again??? PLEASE take care bee HUgs to you too!! Bobble-head

HERE HERE PERSEPHONE!! yeah i agree! I stay away from bread and pasta and potato's for the most part b/c i dont tolerate them very well... they make me feel OH so SICK! and OH SO VERY VERY POTSY!!.. I remember i ate spaghetione night.. and after eating it i thought i was going to die!!! So if I do eat any past or bread or potao's.. I eat sparringly and in small amounts....same thing with meats.. i do not digest or handle eating meeet very well at all..especially pork and beef!.. or any dark meat.. UGHIE! I'm going to start looking outside of tht own i live in b/c docs just dont know what to do for me... and once they cover the basics.. (not all docs here but most i have ran across).. that is it.. and if they cant find the casue for something tis automatically all in my head!!!! I have a good pcp and cardio here! so the search and looking for the puzzle to be put toether is still on... geesh it feels like trying to find a needle in a hay stack!!

Hi Julie I ate radio active eggs here not too long ago.. and they said that it came back normal.. I asked him today before i was put under if.. the fact that I wasnt symptomatic around the time I did the test if that would play a role into things.. and he said.. however a fellow potsy told me a while back that it could! i dont know.. I get tired of hearing the "its all in your head" crud!! its not all in my head.. none of it is!! I think when I see my potsy doc again that I am going to talk to him about a gi doc who has knoweledge of treating potsy w/ the GI respect.. as I'm about to scream!!!!!!!! apparently it is allright to go for days with out being able to eat or drink.. and to puke your guts up and all the other lovely things that come along with GI track... Julie those radio acive eggs are really yellow arent they?? I kept thinking when I had to eat them that they were so darn yellow that they reminded me of danilions (the color)!!!! I started to laguh when I thought of this... and the tech is like whats so funny? so I told him.. and he smiled and cracked a joke.. can you get testing done to see if you have blood pooling in your abdomen?? maybe causing some of the problems?..anyone know??

Hi flks I had my colonoscopy today.... and they knocked me completely out.. still feeling quite dopey.. But I spoke with the GI doc before I left to come home and he said well I think you just have some IBS.. I'm like UH NO.. I think that it is abit more involved the IBS... and I tryied talking to him about dysautonomia affected my digestion and GI track as a whole.. and he told me that Dysautonomia is NOT affecting or causing my GI distress.. I was Like HOLY CRAP!! where the **** did his degree come from a cracker jack box!--in terms of dyautonomia knowledge.. I think I am going to have to drop some reading materials off to him!! alot of it!! and his staff too! I was thinking...like well now my potsy friend s are going to be happy to hear that "Dysuatonomia" does not cause GI problems! WOW He told me that if I continue to have "REAL" problems that I can call his office and they can try some medications.. and that he has found that after patients with IBS have a colonoscopy.. that there GI problems "go away".. what is up with that!! I dont call what I go thru something that is all in my head... I have had these kinda of problems since I was a small small child.. and treatment for IBS didnt help then ..it did not help when I was 17..and I'm sure that it wont help now! GRRRRRRRRRRRRRRRR! I was so dopey on meds that I couldnt get mad.b/c I could barely hold my head up! So needless to say that doc is fired! gotta find a new one..Cleveland here I come! but just thought that you all would love to hear that POts doesnt cause our (and mine) tummy's to hurt!! that is a bunch of Bull!!

Hi folks.. I wanted to drop in real quick and let you know that i have read the posts and that you all made me teary eyed!! love ya all!! your guy's support and encourage means so much to me... I want to reply more and explain things a bit better.. but pots is kicking my butt right now.. and i gotta keep it short.. so you'll all be hearing back from me when I'm feeling better!! luv and hugs to ya all dizz

hi--I bought he book the fainting phenomenon by grubb back in 2004.. to read about dysautonomia.. and i also i used it as a research item for a term paper I had to write for a class.. I wrote about POTS! But it is very easy to read.. and is written in laymens terms.. the averge joe-shmoe.. can understand it.. I ordered mine thru barnes and Noble bookstore i think.. but you can also buy it off of the ndrf.website as well.. I think for a few dollars cheaper then if you had it ordered thru a book store... I have not read the book you are talking about yet though...

Amy-- hi--I do not have doubts of what my doc is telling me.. and based on the little bit of info that i have found on pregnancy and pots.. I know that she is speaking the truth.. its just hurts ya know? I have thought about adoption.. and may start that process eventually.. but i need to vent about this.. as it was bothering me! hugs to you and good luck!

hello folks-- i've been thinking over the past week or so after my last dr;s appoint.. and the discussion that we had.. and have had a few times in the past about.. pots and pregnancy.. I have been debating wheather or not to post about it b/c it upset me.. and I know that this topic has come up before... but I really need to get this off my chest. this is what my docsa re telling me about my indivudual case of pots.. and how a pregnancy would be for me.. its different for everybody.. Like I said I had a pcp app. and we were talking about birth control options.. and more speciafically. that we need to get a grip on my non exsistant periods..b/c I mean like I dont have them hardly ever! i mean areal period that is.. (and most of the time not even spotting).. and can go about 15 month or so with out one.. but getting to my point.. I can NOT use birth control pills b/c of my BP and HR and stuff.. a chance that we are not willing to risk .. and the "store bought" birth control cant use that either.. my doc went on to tell me for the 100th time.. and really drove it home.. that it is very unsafe for me -not to mention a fetus- if i got pregnant.b/c my HR and BP and POTS ingeneral is very unstable(Spiking BP's.droping BP and very unstable HR's).. and that I can not go off my meds b/c chances are that I would get totally non functional.. and would mostly likely spend a pegnancy in the hosiptal.. and that if I stayed on my meds that it could cause some serious birth defects in a fetus-- that is if my body didnt naturally abort... not to mention that docs think that it is very unsafe for me to get pregnant b/c of uncertainty of what the stress of a pregnancy would do to me... its rough on healthy women.. I guess it really hit home with me today.. my best friend since childhood gave birth to her 4th child last night.. a beautiful baby boy! so very cute.. and the reality hit me that i may not get that chance to be amother..to carry a child.. something that i want more then anything in this world..I'm very happy for my friend.. she is a fantastic mom!.. but it makes me feel sad too..and i cried.. i feel as POTS.. and whatever else is going on that they are able to identify yet.. is going on that it is robbing me of a life.. robbing me of my dreams.. I guess in part i am feeling sorry for myself... but I keep getting worse and worse.. not better... POTS has taken so much from me..my shot at a carreer to build s table future financially.. education.. and sometime I wonder waht i've done wrong in my life to have to live with such suffering...daily... i was a good girl growing up.. and in general-I normally have a better outlook on this.. considering that i've lived with it my whole life.. but today i do not.. I then think that maybe for now its best that i dont have children b/c i cant provide the kind of life for them that I would want my child or children to have.. not living on disability.. and that how would I care for a infant. the toddler years..the teenage years when i can barely get off the couch to pee ... I guess that i felt that if i couldnt work or go to school then i could raise a child.. maybe i was unrealistic to think this.. but i did and have.. and i dont know who to talk about this.. other then you guys b/c I know that you all will really get what i am saying. and feeling..

i think that i look aroumd the age that i am.. BUT my hands and feet look like they "are" older"..they look haggard I suppose-- my hands especially used to look like well kids hands.. and now with in the past year they look old!! sounds goofy i know.. but.. they really do!! lol

I'm so glad that you are feeling some relief with this med!!!!!!!!!!!! Now dreaming about a laundry basket chasing you.. I couldnt help but laugh at that.. as I remember some of the nutty dreams that i had on that med! HOORAY!! its helping though that is great!!

HOLY CRUD!!! JANINE!! I'm so sorry that you had to go thru all of this! I'm seriously hope that you are turning around the bend to start feeling better from that adenosine test!! my lord. that sounds dreadfull!! HUGE HUGS to you my dear!! linda

Hi--I've had pots all my life.. varying in severity from time to time.. But I was able to work from the age of 16 to 20.. I was let go a few times on jobs b/c I missed alot of work due to being sick with pots! only I ddint know that I as sick with pots.. When i was 19..I had to reduce my hours that I worked.. and stop going to college.. then 7 months later i had to stop working all together and a month and a half later applied to SSDI.. the entire year of 2002..was horrid--I was finally officailly dx in 2003 when I was sent to dr. grubb-- he put me on amed that helped me. and I returned to college.. and went full time the first semester-- then kinda went down hill after that.. and had to stop going to school AGAIN!! i couldnt imagine having to work or go to school now..my pots in quite severe right now and has been for over ayear... I too like ernie.. am a couch potato---and find it close to impossible to get daily living things done... BUT I would love to some point be able to get well enough to atleast go to school part time. or even work!!!! ..

Hi Ariella!! its great to see you back on the board again!! Linda

Nina-- Hi I DID NOT switch a drug when starting Cymbalta.. but i did try cymbalta back in september.. and i was pleasantly surprised that it helped me.. it did help with my bone pain.. and it gave me a small boost of energy.. and helped me sleep a tad bit better.. Start on the lowest dose--which i believe is 20mg.. Dr. Grubb's NP Bev gave me this drug in september when i was really reeling with adrenaline surges to help calm my ans system down b/c I was having the same problem that you are having inregards to racing thoughts and my brain going full speed ahead!! But it did help.. I understand you fear of switching meds.. starting new meds is scary for us b/c we never know how we are going to react.. Bev told me that they are finding that Cymbalta is people with chronic pain.. like diabetic neuropathy- my therapist told me that it is helping people who have fibromyalgia too.. hang in there nina.. and if you try cymbalta let us know how you are doing on it k? Hugs to you! linda

I'm taking Ceftin which normally works well for me.. i took it in January when i had streph throat and last year.. i took it in combo wit h stuff when I had walking pneumonia... I'm going to call my pcp i think in the morning if i still feel this wya.. my brain actually feels like it is jiggling around in my head.. along with the headach.. adnif i move or anyhting.. lovely feeling i tell ya--not

hi folks I started an antibiotic last week for an upper respitory infection.. well initialy I started to feel better on the antibiotics.. and this past weekend I started to feel bad again.. loosing my voice-- my ear hurts like a son of a gun.. and I thought Ok.. I'll give it a few days.. and see if the antibiotics kick in a bit better.. Well yesterday and today.. I'm straight up miserable.. this afternnon my ear started hurting majorly.. and they glands and stuff behind my ear are swelling up.. and the pain an d sweeling is traveling down my neck... and up into my head.. and is causing a really bad headach.. the pain ans weeling behind my ear is bad to the point that i can not turn my head to the right.. and I'm now running a fever of about 101.5... mind you my temp normally runs about 95.6... and my chest had started to feel better.. and now it feels worse then it felt when i went to the doc on thrusday.. BIG TIME OUCHIES! holy cr#p it feels like there are 100 tons of concrete sitting on my chest and on my back... and this infection virus waht the heck it is is causing me to feel really bad potsy wise.. I'm starting to get tachycardia... and my vision and dizziness is getting worse then usual.. I have the chills that are unreal.. I'm so cold.. and my body ahces!!!!!! I've taken tylenol in hopes tht it will help my fever and some of the ody aches and stuff i've got going on.. but do any of you actually feel worse with antibiotics? maybe I need to try a stronger antibiotic?? though this is one of the few antibiotics that works well for me.. so I dont know what else we could try.. sorry for the sissy moment.. but man I feel horrible!

BEE those ENT's you've seen need a real kick in the pants to not have noticed waht was giong on with your nose swelling and you perifiated (SP??lol) ear drum.. it amazes me how much docs over SOOOOOOOO MUCH!! I'm glad that you appointment went well .. and gosh darn it Bee keep your "phermones" to your self!! lol--Kidding!! take care dear.. and i hope that you feel better from the period blues soon k!! hugs dizz

GOOD LUCK PERSEPHONE!!! We are rooting for you!! Is this your last term for the year? how many years are you going to OXford? Hang in there Girl!! YOU CAN DO THIS!! I'm so very glad that you had a good day!! they really are a major boost for us arent they good days where we feel normal and can do what we want!! I'm happy for you!! love and hugs linda

yeah dear sounds like it might be a migraine.. and those are no funa t all.. I would say call your doc and get into see him.. in the mean time you can try Excedrin Migrain.. I used to take it for migraines.. but had to stop.. it has caffeine in the excedrin... DO you handle caffeine? you could try the excedrin migraine... i hope that you feel better soon dear! hugs linda

I would be willing to come.. I live about 2 hours from cleveland...But have no suggestion on location b/c I'm not familiar with the area!! other then CC :)