dizzygirl

wow lisa.. i hope that you can finds some meds to help you.. and things go well with you in terms of disability.. and that that port thing gets taken care of soon.. you dont want it to get infected! please take care and take it easy.. hang in there HUgs Linda

hiya steph.. a few months my doc gave me Mobic.. it is an anti-inflammatory... I have samples of it.. and have not started taking it yet.. (i'm a big cheicken) I do believe though that she said that it is one of the more gentle infallammatories out there... let me know if it helps you! as I am suffering from mysterious pain too!!.. I havent ever heard of Zanuflex though.. sorry!!

hey folks.. i just wanted to pop in and give you all a quick update... I dont feel like loads better today.. but do afeel alittle bit better.. my BP is higher today about 75-80 over 58.. with a pulse between 100-120.. so my HR is better then yesterday.. and so is my BP.. still kinda low but atleast i can kinda sit up today!! My migraine is kicking my rump.. no relief there.. but hopefully yhings well turn out good fidau...with neuro... thanks again for he supprt guys! your the greatest!

hey now that is cool!! after the movie comes out and he is rich and famous.. he can be our celebrity Spokes person for POTS!! LOL really that is very awesome!! looking forward to seeing the movie

hmm.. interesting.. topic.. forgive me but I am having a major blonde moment!! LOL Ok systolic is the top Number ?? Diastolic is the bottom number ?? OK my Top number tends to go up and down when ever it darn well pleases.. (par for course..) typically ranging anywhere from 47-160 and my bottom number will range anywhere from 23-115... big differences there.. Like NINa mentioned.. my BP can bottom out and I still will be able to chatter on.. and comprehend what is going on... though I may not remeebr it later on... I know that a few times after having passed out that my BP is quite low.. and probably got lower right before and during the syncope spell... depending on the potsy kinda of day will depend on how much I spike or dip (drop) when standing or moving or sitting up.. Oh yeah here in septemebr I had to go have PT eval done.. and I was so syncope feeling it wasnt even funny.. well they took my BP and my top Numbre was 150 while my bottom number was 0.. no wonder I felt so rotten!! and the nurses who check my Bp are always looking at the cuff checking to see if it is malfunctioning or something.. I'm like nope its not.. my body is wacked out.. and if your are getting nutty readings then that is what it is..

Oh My goodness Lisa.. I am so sorry that you are having such a horrid time... I really hope that things improvef ro you.. and that you start to feel better... keep us posted.. we are here for you!! HUGS Linda

Hi.. I am diabetic.. I forgot all about that!! I think it might be a double whammie of dehydration pots and diabetes.. my sugar levels havent been to terribly bad latley though... I think that if i have another rough night.. I might need a trip to the ER.. (which I hate!!) but am feeling that badly.. I have discussed IV's many times with docs.. and they all say they dont want to risk infection of a ah.. line being inserted long term...that and I am very difficult to get an IV into.. during my EP study last week.. they ended up putting the IV in my groin.. where they were doing the study through.. OUCH!! But they did say to save my rare IV use for emergency's.. hmmm.. ok off for check my sugar and drink some more water.. geez i could float all the way to china the rate i'm going!! I have barley pee'd at all today too.. HELLO LINDA BIG red flag !! DUH!! thanks guys for yoursupport dizz

Hi folks... I am more or less posting to vent today!!.. I am having some real BP and HR issues today.. and yesterday too......nothing new right? Saturday i strted getting a mjor Migraine.. and let me tell you it is kicking my butt!!.. and the weirdest thing happened also.. Not something that I have ever dealt with before.. I got a major dizzyspell while laying down (thats not unusual..) but I sat up b/c I felt like I couldnt breath.. and the instant that i sat up.. I got a nose bleed! I have never ever had nose bleeds before....I knew that once I woke up saturday evening and saw 2 scarecrows instead of one.. (LOL ) sitting on the TV that i was in for a rollercoaster of a night or time I should say...and I had another nosebleed this afternoon! i have never had nosebleeds ever.. its ticks me as odd.. maybe the air is too dry here or something I dont know.. well..I just havent been feeling well and have spent alot of time laying down.. i try to force myself to get up and move.. and my body is SOOOOO heavy and dead weight feeling... But getting to my point.. my potsy is just raging through me.. and it is starting to p@&% me off!! I am having bad autonomic storm/surges.. I try to sleep at night.. and am sleeping like 20 minutes and I wake up sweating and shaking profusely.. and I am so faint and messed up feeling.. and sick feeling (meaning nausea.. tummy aches.. the works..) i just am so frsutrated! my tummy was starting to feel alittle better. in regards to apin.. and being able to hold food down and such.. and now its worse then it was a few weeks back!! Insomnia is abck full force too...i was sleeping atleast a few hours a t nioght.. then really crashing during the day.. now i cant even sleep during the day!! and I am so freakin' tired that i cant stand it... my pain level is through the roof.. my legs hurt so badly that i cant stand.. my feet are swelling to the point that even putting sock and slippers on is "tight".. well i've been watching my BP and what not.. the past few days..as I have been so syncope-y- feeling taht I cant bare to stand... and am SO DIZZY!! and floaties galor.... well at the docs today.. (what ajoke!) my Bp was low and I felt like i was going to hit the floor.. I havent been able to hold my head up straight or sit up straight for days now.. from a combo of the pain from my migraine and the potsy feeling in my head.. my head feels really heavy and weak.. UGH I checked my BP here at home and its reached an all time low.. of 45/23 w/a pulse of 46.. you can abrley feel a pulse in my wrist... then it went from 46 to 120 just like that..a hard slow pounding.. go figure!! i realize that in my case that 120 heart rate is mild compared to what it usually is.. but jumping lik that from 46 to 120 just like that.. is enough to make you want to puke.. UGH! I have been drinking the gatorade and eating the salty ham and stuff for 2 days.. I am SOOOOO thirsty.. i cant get enough to drink... the other night I drank allmost a gallon of gatordae.. I usually keep 2 bottles by the bed.. I was having such bad autonomic spells.. that I had to venture down stairs in the middle of the night for liquids.. something i dont do b/c I am so unsteady on my feet at night.. sorry folks I dont mean to sound depressing.. but I am just like so tired of this pots.. and not feling well..I satat the docs today for over an hour.. (seeing the fill in doc.. as my doc wasnt in..I waitied like a hour to be seen.. and she said you need pain management.. I'm like I know.. I was having such a hard time sitting there.. I'm like if you could find the roof casue of my pain.. then maybe it could be treated properly!... i ddint mean to snap at her...but i'm so sick of everything!! I have multiple pain meds to take.. and none of them help... vicodin does take the edge off some butt makes me feel really wacked out.. and messes up my GI track even more then it allready is.. Ok.. one good thing came out of my dr. visit..today.. ig o see a nuerologist friday who treats migraines!!! through a migraine clinic.. so that s a plus.. but they couldnt give me anyhting heavier for the pain b/c my BP isall over the map and so low then high.. which i understand... I guess I am feeling kinda depressed tonight...and just needed to get this of my chest... thanks guys it you read this all the way through.. and sorry its so long!! averydizzydizzygirl

Hey I like those!! you did a good job girl!!

OH MY!! Happy Birthday Nina!! hope that you had a great day!! and that the year to come is full of good things for you!! linda

Hi .. i dont have an advice on Toprol.. I have been on it.. but its been a while and i dont rememerb how i reacted to it...however i can tell you that without meds that I am even more symptomactic.. then wioth out them... I did want to mention that I dont think that insurance will pay for a BP cuff.. but what was recommend to me by dr. grubb.. was an Omron BP cuff.. I have the automatic kind that measures it.. but you pump it up with the balb-i- thingy-- I got it a t rite Aid..(that is adrugstore here in Pa..) like over 2yrs ago... and it ran about $70 bucks.. i realize that that is kinda pricy (it actually was one of the cheaper ones!!) Its the kind that you use on your upper arm.. not your wrist.. and it is very accurate... mine runs on 4 double A batteries.. and it will keep track of your last 10 BP reading.. it also gives you your HR too... I find it to be helpful.. help pinpoint things... good luck.. i hope that you find the right dose of meds for your self! Linda

Hi baby Boy... i just wanted to mention that i have alot of problems sleeping as well... I get very bad insomnia that last for weeks and months at a time.. where I virtualy dont get any sleep.. and when i do sleep its not a very restful sleep... I have had insomnia problems since i was alittle girl (and am now 23!!).. i have tried all the relaxation techniquues.. dark quiet room.. w/ no noise.. then with low mellow music playing.. a wide variety of music..i used to have this thing.. Its made by Homemedics.. its called a sound spa.. it has like 6 buttons and each button has a different nature noise that plays.. that actually used to help me sleep.. as I grew up in the country.. and once I moved into the "city' so to speak.. i couldnt get used to all the noise..(cars.. sirens.. drunk people on the corner.. ya know.. the city!!)..i liked to listen to the crickets and frogg ribbitting.. LOL.. you can also try some deep breathing exercises.. to maybe help you relax.. you breath in slowly through you nose and hold it for like 5 seconds and then slowly exhalethrough your mouth.. and repeat... Um I often will get awaken fron sleep with pretty high tachycardia.... then usually after that happens.. my sleep isnt restful.. i try drinking something cold.. opening a window..(maybe not so much now that it is winter time and snowing..) turn on a fan.. and if need be.. i take an extra BB..(beta blocker) I hope that you can get some restful sleep...soon.. alot of us here total understadn the insomnia and other sleep disturbances that come along with the potsy package... hang in ther BB!!

Hi.. I am starting aquatic therapy here in a few weeks... I've been told that it is easier on your body to "exercise" in the pool.. as your dont weighas much or something like that.. anyways it is also suppose to be good for you legs.. to strengthen the muscles and what not....aquatic therapy can be done through a hospital PT place or rehabilitation hospital.. just talk to your doc about it... Insurance will typically pay for it.. I will be going 3x's a week.. for about 15-20 minutes at a time.. I'll be surprised if I can go that long to start with with.... and also am going to start PT for leg strengthening stuff.. hopefully they can teach me some floor stuff to do.. I hope that you can find some exercise that doesnt bother you to badly.. good luck! Linda

WOW!! you too Nina are an inspiration.. there is no way that I could prepare myself for a race!! i think that it is awesome that you are doing this! I will be thinking of you and rooting for you on race day... good lcuk MighyMouse!! Linda

LOL!! YES I have seen those goofy commercials!! and yes we would look better racing!! I know what you mean about the shopping even with the chiar... I have been using the power chairs at walmart now to do my shopping.. and I still get so tired.. sometime this week i was there getting a few things.. and I was having a potsy moment.. a big potsy moment.. and I couldnt see right.. and I ran right into a guy in the isle..i really couldnt see him there I was SOOOO embarrassed!!.. he was like OMG!! I'm so sorry!!.. I'm like dont worry its not you!! its me!! Needless to say I felt like a dope!! and quickly left the store.. and had to lay reclined in the car for the ride home... and then spent the rest of the day and night in BED!! ((((((SIGH)))))))) SO right now I pretty much go out to the store only when necessary.. maybe once every 7-10 days. LOL!! Linda

melissa-- god bless you girl!! I'm just in total awe that you still plug away despite how sick you have been!!( i know how rough it is and can be!! ) You are an inspiration to me and other i am sure.. take the time you need to do what you gotta do.. and that is great about the disabiltiy panel.. very cool! Stock up on the salty things.. and gatorade.. and stuff.... Just wanted to say I hope that you feel better soon!! and that you can get some help from "you know who "with the IV's--if you have luck with that let me know!! I will be truly surpirsed considering feeling on that!! hang in there girl Linda

LOL!! you guys are too funny!! Yes I am very glad and relieve that I finally after months of waiting got my wheelchair!! I am looking forward though to testing this baby out at the mall!! ShOpping w/o passing out in the stores!! YEAH!! Melissa.. YEAH!! come join our wheelie races!!..Ready..set.. wheel!! ONce I get my permanent wheelchair..(right now I am using a demo chair till the one they ordered for me comes in..) my friend Danyka is going to come over and help me "decorate" it.. I'm thinking some glittery purple and pink butterfly's will look good.. and a a nameplate stating "dizygirl" will be good!! Or born to be dizzy" Oh well this is a as close to "driving" as I am ever going to get.. might as well have some fun with it!! watch out for wheelchair rage!! LOL.. just kidding!! jacquie802---I dont know what casued my pots..I am thinking that I was just born this way..I've been "POTSY" my whole life to one degree or another... Dizz...

perse... here is the name of that new( for me to be taking anyways) beta blocker.. I couldnt think of earlier.. it is called KERLONE.. generic name being bexatolol... I took my first dose today and it lowered my heart rate down to about 115-120(considering my rate is usually much much higher!) ~!!! WAHOO!!.. i cant even feel my heart beating even when i stand!! what a weird feeling.... I am remaining hopefully that this med will show long term good results.. first dose good! but anywys wanted to let you know the name of it before I forget to post about it..it is suppose to be a nore potent form of propranolol (inderal).. and longer lassting too.. good luck persephone!! :)

Hi Lauren... hmm.. you got the heartburn monster invading your insides huh?? that really stinks! I know that alot of the time I feel like i could blow fire out of my mouth just by breathing!! with all the burning going on in my throat! I wanted to say until you can get into be seen by your doc.. you could try some over the counter anti-acids.. like prilosec is over the counter.. or pepeto bismol.. it can help too.. and you can try old faithful.. a tall glass of cold milk.. or several glasses .... that sometimes can help with the burning... Depending on what is causing your heartburn.. and such.. and how long it has gone untreated.. Like I have GERD.. and it was left untreated for yrs.. and casued some problems with uh.. damage to the stomach and esophaugus.. b/c of acid and vomitting.. THre are tests that they can do to rule out GERD or some acid reflux.. I believe I had to do a barium swallow..(YUCKY ) and an Upperscope.. cant htink of the proper name for it though (?????) oh and also dont eat alot of food at once.. that can make the heartburn worse too.. I would try something at home and see if it helps then get into see your doc monday or something. good luck lauren hope the heartburn settles down.. linda aka. puff the magic dragon...!! LOL

Belinda--i have been thinking of yout oday and just wanted to pop in and see how you are doing.... I read in your post that you "are sorry about being so negative..." BELINDA!!! dear you are not being negative.. you were treated badly and dismissed by the medically profession.. and you were upset about not feeling well.. that is not being negative!! its being Human!! Shoot.. I'd be concerned if you ddint show some kind of emotion! Besides.. this is an NO APOLOGY NECESSARY ZONE!! as i seem to recall one of our felllow potsy pals saying!! anywasy i hope that you can get some answers and can get in to cleveland to be seen.. good luck to you!! HUG Linda

hey perse.. well i have been on oodles of meds.. and the meds you mentioned dont do swuat for me either.. so here is what I am on now for my pots.. mestinon--pots and stuff--i take 3 times a day at 60mg each time Cymbalta--i take once a day at 30mg daily I just started a new BB.. though I cant quite think on the name of it at the moment... will let you know if it helps the tachiness.. oh and I am suppose to be taking provigil to.. it is primarily used to treat narcoplepsy.. but is being used for me so that I can get some energy.. But I am a big chicken and afraid to start another new med! I'm on a boat load of other meds--- look at my signature....but mestinon and cymbalta out of all the meds that I have been on in the past 4 yrs. these have helped the most... I hope Persephone that you can find a med or meds that help you as well!! good luck girl!! linda

yes iagree w/ Ithomas.. on delagating things... and I also schedule appointments for as late in the afternoon as I can schedule them.. as if I push myself sometimes in the AM or even early afternoon.. I am more apt. to crash once I get home.. or pass out on the bus or something... I also find for myself that in order to get like grocery shopping donw I go at like 1-2 am.. when the store is pretty deserted... and I dont have to deal with growds.. and you are more likely to have a motorized wheelcahir available at night then during the day.. sorrry kinda went off on a ramble there! anywasy I hope that you can find things that help you get through the fatigue! HUgs dizz

I battle very bad fatigue daily.. some days are worse then others.. for me my fatigue is stemming from mulitple things.. meds pots.. and other mysterious things going on.. I think trying to pin point some of your fatigue will help you be able to deal with treating it better.. for myself.. i try to force myself to do very small bouts of activity.. to keep my body moving.. (basic things most days.. brush teeth.. go pee.. put on a 3rd pair of warm socks...LOL.. make something to eat. and keep a bottle of gatorade and water and my disposal..)... and sit outside for fresh air..as it seems to make me feel better.. (depending on the wheather and temp..).. also i sleep alot as it is.. on an average day I sleep roughly 16 hours.. this includes naps too.. now on those real bad fatigued tired days.. there is no getting up for me.. as my body is like beyond fatigue.. and I will typically sleep for 2-3 days at a time... and once I do this.. I feel alittle better.. I hope that you can find something to help yopu!

well for me personally.. i cannot handle the caffeine in pop..(lots of tachy and potsy stuff..) and I cannnot handle the bubbles in my stomach/intestines.. b/c the bubbles cause me to have a stomach ache.. and keep me running to the bathroom .. I havent drank pop/soda in like over 3-4 urs. now simple b/c for me my body cant handle it..even though I do miss a nice big glass of ice cold cherry coke now and then!

Belinda.. I just wanted to send some BIG HUGS yourway.. and that I hope that you are feeling better and that you can get to the root fo your breathing problems... and that you get relief from that... also..screw them docs.. I'm sorry that they autommatically think that b/c you are crying and upset that you need a psych eval..!!! OHHHHH that makes me so angry!! I have been there done that.. and ahve been sent to a locked psych unit.. when I was suppose to be having a emergency neuro consult!!.. I'll leave that story for an other day!! please dont beat your self up about htings... I wish that theyre were a way for people who do not live wit an invisible chronic illness to walk in our shoes for just a hour.. then they wouldnt be so judgemental and quick to blame you or your mental health!! please take care belinda! dizz