dizzygirl

no I'm not having epileptic seizures.. my most recent eeg came back abnormal.. and they cant not rule out that i'm not having some sort of seizure.. i have a neuro who treats me for my migraines.. but she is stumped as tho all of the other issues going on.... I'm scheduled to see dr. grubb in a few weeks. then a week after i see grubb I'll be going back to ohio to see dr. fouad..(cleveland clinic) and to have a blood volume test done. I contacted another ans specialist.. he is"thinking" low blood volume might be contributing to things. Next week i am overnighting my films and records to the chairi insitute.. in hopes that they can further evaluate me and see fi they cant figure out what is happening.. I have alot of tests and labs tht come back abnormal.. but nothing clear cut enough to piece together the full picture you know? ((((((((((((((((sigh)))))))))))))))))))) i dont know.. i did try eating abit.. but my head is hurting to the point that it hurts to chew ireally need some IV fluids.. but next week wont be able tog et any b/c my doc is on vacation... so I'm trying to down as much fluid as i can..

hi all..I need to vent to somebody who is going to understand what i'm talking about.. last night i was very tired.. but i couldnt sleep.. despite the fact taht i was so tired.. I layed in bed for a while.. and then i started getting buzzing in my ears.. louds buzzzing.. and i started to feel very restless and well antzy.. i could feel the outpouring of adrenaline zipp thru me.. b/c it made me feel sick as all get out.. then I had to start peeing like every 2 minutes.. and i was ahving a ahrd time controling my "urges" to pee.. I was having leaky issues and stuff.. totally gross.. well then the intense tummy pain started.. and with the tummy pain came the shaking and the chills.. and extreme thirsty.. i had the chills and shaking.. and felt all other except for my face that i was burning up.. the chills where like on the inside.. and where making me feel cold.. but on the hotside iwas burning up.. like my body was on fire. then the nausea hit and and bad diarrhea...so on it went... i finally was able to lay back down .. and the tachycardia started.. and the trouble breathing.. i get weird pains inmy lungs.. where it feels like my lungs are ahving muscle spasms. and when i get pain like that i can not breath.. like really cant breath.. I'm in able to take even little breaths fully.. i was like that for about 20 minutes. thsoe spasms normlaly simmer down on there own. but its still scary to expereince.. the tthat spams spread from my lungs down into my entire abdomen... and then i washaving trouble breathing.. but this time b/c of the tighening everywhere. and the pressure that i was causing on my um the thingy under your breast. where the breast bones (sterum??) meet in the middle and form the upside down U.. so I went on like this all night.. and sometime around 5 am-6 am I kept hearing waht sounded like really muffled guitar music OK.. (i'm not crazy here but it was driving me insane)!!!!!!!!!.. i actually got up and turned the fans off.. b/c i thought i was somebody car radio or system or something playing this loud music at 5 in the mrning!.. i turned the fans off and listened.. and i couldnt hear it.. when i stood up it disappeared!!!!!!! but the minute that i laid back down it came back.. and my ears started to hurt!! how crazy is that????.. so iput ear pluggs in my ears.. and finally took an extra clonidine.. and with in 20 minutes the "music" stopped.. and i was finally able to drift off to sleep.. only to wake up a very short time later with full body jerking that hurt like the dickens.. i was ahlf a wake and half a sslep.. fell back to sleep.. and woke up some time later.. and i was paralysing big time.. full fledge nasty spell..i was going in and out of consciousness quite abit... I remember has i was starting to come out of the apralysis that the telephone range some time after 7am.. and it startled me.. and caused my allready sensitive hyper allert system to react.. casuing recovery to be worse and even more painful I really can not hadnle the apin during and especially after a bad spell its more then a bit to much... I'm still ahving pretty bad burning and (feeling of)tearing in my right shoulder into my neck.. and down my arm some.. and periodic cold stinging thru out my entire body.. and stinging in my face and lips.. pain with in all of my bones.. as usuall my fingers and toes seem to bare the brunt of pain and dislocating.. big ouch there holy crap I've keep waking up.. or its is waking me up with tachycardia.. yucky.. and i've still got a very bad headache and feel pukey to the max I'm trying to figure waht casued me to flip out like that last night and i'm not real sure.. though I woke up not feeling well yesterday.. i had a dco app. and i started to get really symptomatic in the exam room.. i was about 1- 1/12 blocks from home.. and b/c it wasraining i walked the few blocks home instead of using my wheelchair.. and i got home and wwas so symptomatic and really needed o lay down and i slept about 5 1/2-6 hours after my appointment.. i dont know .. i just needed to vent as I'm feeling pretty gosh darn icky still.... I'm trying to talk my self into eating something.. but i dont think that is giong to go over too well. UGH.. though i just ate some dill pickle slices .. thanks for letting me vent folks

yeah i get like that.. before i realized that i had a problem with carbs (pasta-potato's..bread starchy stuff) i ate it like crazy.. I so LOVE pasta of any kind and butter bread... Now I hardly eat any starchy food.. and I've found that it helps abit with feeling sick after meals... also the eating small meals that does help too.. but i think its apots related thing for us.. and we are sometimes going to feel sick after eating.. regardless of waht we eat at times.. its just the body way of pulling our blood to our guts to digest food.. thus leaving us with less blood then before to circulate every where else that it needs to go. its s*cks I know.. hope you feel better dear hugs dizz

yeah i wanted to add that in the winter time especially or it i run my hands under cold water.. that my hands and feet and nsoe dont just get like cold.. but cold to the point that they hurt!! and once they "thaw out" its a burning painful ouchies process! that in the winter time.. when you go out side.. dress really warm especially the hands and feet.. I used to have to wait for about 30- mnutes or more outside in the blowing snow... waiting for the darn bus.. and that was pute torure for more then one reason!.. but i'm to the point now that i dont leave teh house in the winter unless i go directly from the house to a car or cab.. that is warm and not cold.. and i wear triples on socks and gloves.. and my face is so bundled up that you have to peel away the multiple layers of my scarfs wrapped around my head and aface.. lol.. dont know why i'm teeling you all this.. i just fond out not to long ago i have raynaurds.. but have had the probs for a long long time!

i have scoliosis.. my spine is in the shape of an S.... i would recomend that you dont not go off all of your meds with out first talking to your pots doc or who ever treats you for your pots.. that could be devastating for you.. also please do try and avaoid traction!!!!!!!!!!!!!.. OMG!! i had traction back in 2001 before i knew i had pots.. and it made me feel SOOOOOOOOO much worse.. i'd get so dizzy and lightheaded afterwards.. and my neck would hurt more after then before i went in... the PT i waseeing was convinced that it would make me feel better.. i didn not.. how ever waht does help .. (done by chiro or pt person).. is ultrasound or message.. and moist heat on your neck or back.. laying dwon of course. and use a pillow thingy under your legs.... it helps me. but i cant handle heat be put on my chet or something.. it makes me symptomatic.. good luck to you.. i seriously would recommend an opinion from your potsy doc on this one!!!!!!!

yes i've been on mestinon and midrodrine.. i was on mestinon both regualr and time released form.. for about 1 yr.. we tried SOOOOOOOOO many different doseages and times of day to take it.. I was on HIGH doseages of mestinon. and it lost its effectiveness.. and i couldnt handle the side-effect no longer..(GI wise) midrodrine.. I dont do well on it.. have tried it 2 different times.. again at diff. doses.. and the 2nd time on it I had a horrible time on it.. and now its in my list of med allergies... i really have been on a ton of meds.."we" (docs) are starting to hit road blocks on treatment options available for other health problems.. b/c of problems with pots.. i just came from an endo apointment.. where the NP was like we have never run into this ... w/ one person having so many drug allergies and med intolerance.. and we've never treated a patient with pots.. i dont know maybe i should just suck it up and grin and bare it.. as sad as this sounds.. these 2 bb's together have worked the best.. i had a 24 hour monitor a while back.. then a continuos one for several weeks and i got my HR at 170 and higher on my BB's... i dont know i feel bad asking my doc to come up with an other med again to use!.. but i'm so exhausted its unreal...

hi.. no they have no figured out why my hr goes over 200.. i was told that its unrelated to pots.. b/c pots "isnt suppose" to cause your rate to go that high.. but they dont know what exactly is causing it to shoot that high... and yes i get it sitting laying or standing.. if i sit or stand they go higher.. on many many occasions I've had a resting hr of 204-220.. while laying down... and not moving..then upon standing ti will go up over 240.. But i plan on talking to dr.g about my meds.. i kind of feel bad.. b/c he gets some what of a sad look on his face.. when i say i cant tolerate a med.. we have tried just about everything... I'm allready on the max dose of one bb.. cant go any higher.. and at a lower dose it doesnt work at all.. i dont know.. we'll see.. I'll let you know what i find out.. thanks dizz

I wanted to clarify that i'm not tweeking my meds.. I'm on the same dose have been for a number of months.. and i've been on clonidine the pill form since september i think.. and betaxolol since november.. and i started off slowly quarter of a pill and worked my way upto the max doseage.. and since i started it it makes me feel yucky.. but help the heart rate issues to a certain degree... so i've been on these meds roughly 9-10 months.. and they jsut wipe me out completely.. I'm guessing it b/c by the time i'm ready for my next dose that my heart rate and bp are speeding up again.. and the neds slow them down.. but i'm not making any changes.. that is for sure until i see my potsy doc in afew weeks.. this is like the first somewaht successful bb that we have found that works even a little bit.. i kind of dont want to go in there and say.."sorry but these help but make me feel like "dopey the sleepiest most lethargic elf around" i really have been put on at the very least over 10-12 different bb's.. and treid and ALOT fo different doseages as well. lauren. LOL.. I still want a littl furr ball (kitten).. but I'm going to wait a bit before i get one.. I'm hoping by the end of summer to get one.. my parent live near an animal rescue shelter.. and i thought i scoop up a pet from there..dont worry i'll be sure to let everybody know when i get a pet.. my grandma also thinks its about time for me to get a pet.. the last one i had was my kitty snuggles.. i had her befoer i got sick.. and once i got sick.. i ended up having to put her up for adoption b/c i lost everything and couldnt afford to fed her or properly take care of her.. she was the sweetest kitty!!.. she'd lay withm e all day in bed.. and once i'd get up she'd walk at my feet mewoing at me.. then sit on the edge of the tub if i was in the shower poking her head around the shower curtain with an occasional meow.. she was too sweet. broke my heart to have to give her up!! I'll PM oyou dear.. i do not handle ssri's at all. and i wont go back on one any time soon.. so bb's.. i have to find one that works well and doesnt leave me feeling like a lush or lethargic feeling. ugh!

Hi folks.. As most fo you know i have some pretty gosh darn high tachycardia rates... and b/c of that i'm on 2 beta blockers.. well my dilema being 1. roughly 1-1/2 our after taking my morning dose of meds (bexatolol I'm on the highest max dose aloud).. that I get really really tired.. and will sleep anywhere from 2-6 hours straight after taking it.. and I'm just useless after wards.. and very very low functioning..(aside from potsy stuff) the same thing happens at night.. (which would not be bad) but my clonidine dose is higher at night the n during the day.. b/c i get bad adrenaline surges like clock work between 2-6 am.. and before starting clonidine i was getting them just about everynight.. now i only get them mayb once or twice a week.. 2. I'm wondering if I should stop the beta blockers b/c they make me so sleepy and out of it.. but they keep my HR at bay running anywhere between 55-150... which is good for me b/c i get up really high..though a few times it has gottne up to over 200 on this dose of bb's...but not as often as with out them.. i've tried taking half the dose or a quarter of the dose of meds.. (when i started on the medication.. i started there and worked my way up)and it just sint effective unless I take the full dose both at night and during the day... If I'm not on a bb (or any bb)at all then my HR will be up over 190-200 constantly. and i will feel much wore potsy wise then i do now I'm debating what to I feel like its a catch 22 either way I go.. stay on the beta blocker.. have my hr stay under 150.. but be so whipped out all the time and sleep my days away.. or go off the bb's and be totally non functional b/c i cant deal with my HR.. either way i feel I'd be well scr*wed.. I'm not trying to be a pain in the rear as this combo of b's has worked the best overall in comparion to any other bb's i've been on.. and i've been on alot of them... I guess i'm wondering what you guys would do if you where in my shoes sleep you days away... and at night pass out while oyou are laying down.. but have less of them terribly surges.. or go off the meds.. surg all the time... woudlnt be so tired.. but would be more potsy i feel sick regardless of weather i take them or dont take them..

I have always had several bouts of bronchitus. yupper respitory and bronchial infections... when i started getting really bad with symptoms... I started getting acute bronchitus about 5 times a year along with upper respitory infection..in the winter of 2002/2003.. I ran freaky high fevers (101-103).. and had such trouble breathing. I had pluerisy for about 5 months straight.. and couldnt shake it.. on top of bronchitus.. spring time was looming.. and I got acute bronchitus again!! then again in august only that one took about 2 month to get over.. Over the past year..I've had pneumonia once..and bronchiuts and upper respitory infection, chest colds roughly..6-7 times i think...UGH!! ontop of other "normal " illnesses this year.. mymy mymy I was diagnosed with astma when i was like 17-18.. and then later more testing showed that i have restrictive lung disease.. not astma!!!!! I dont know why i get these types of infections so much but i do. I live in a smkoe free enviroment.. and i have never smoked. and nobody is aloud to smoke around me.. (i'm allergic to cig smoke) &it makes my lungs hurt.. Do you foks often feel that your lungs are full of junk?? meaning congestion? even though you dont have an infection in them? My chest and lungs hurt 24/7 and my breathing has seen better days!! just curious.. I'm currently not on a treatment for my ling disease.. they said i have tried everything that is vailable to try... and told me to learn to live with it! HELLLLLLOOOOOOOOO!

Hi I experience the same things you speak of... its is part fo the potsy package that we have been dealt......maybe you could talk to your doc about the bowel issues.. I know I've found levsin to help on some occasion.. good lcuk dear and welcome! dizz

me too

yeah iw oudl suggest dyna kids too.. and make an appointment in the mean time with dr.grubb.. if memeory serves me correctly his bussiness card states pedicatric cardiologist as well.. maybe you could go to your PCP while waiting to get into to grubb or another pots doc.. good lcuk I'm sorry that your son is dealing with pots as well..

thanks lauren!! I hope to be cooking with gas soon!!!!!!!!! LOL.. i rally hope that the "ball" does not get dropped like it has so many times in the past..things that are going on cant be ignored any longer!! i'll keep ya all updated as i find stuff out and hopefully get some answers..

i have raynaurds aswell.. my potsy doc dx'd me with it afew months ago..i was given no treatment for it...

hey folks.. I got my MRI results today.. it shows taht i have a alrge disc herniation...(which i allready knew from 5 years ago.. but it was small then).. and bigger now.. and the disc is causing impingement on my spinal cord.. and it shows that i have stenosis as well... I'm going to be sending recods now that i have everything off to TCI-- I'm wondering w/ multiple finding thru x-rays and mri.. if the spinal cord is being pinch off.. do you think that could cause paralysis.. and some of the brain squeezing i am expereincing? does anybody else have these issues? I'm hoping that TCI can shed some light in more depth on to things... But i wanted to share with you all what i found out.. as you all have been listening to me complain up a storm about things over the past few months.. i'm sincerly hoping that the neuro's out at tci.. will be of some help... as i think there might be more invovled.. ya know? Oh yes one more question.. does anyone have an article or articles on the spine affecting dysautonomia? thanks a bunch dizz

Sue hi well how i get thru it.. from day to day.. somedays are hard.. where i dont do anything.. and i am a permanent fixture in bed or the couch.. and I've accepted that that is how its going to be.. and if the "folks" around me do not accept that.. then that is there problem not mine. My brother does try to come visit when he can.. and my freinds come see me for the most part now.. so i dont have to travel and do the hassel of getting sick and being totally drained by the time i get to them. I for the most part and about 90% house bound.. i go out to go to the docs.. the hospital for fluids.. and an occasional trip to walmart for groceries and necessities. When i can get out to the store I try to buy a few things that will "entertain" me.. I have a few hobbies of crochetting..and needlepoint work..(my best freind abby comes up a few times a month and we have "crocheting parties"..lol).. I love to read...and watch movies.. i also make quilts.. another hobby of mine... so i try to buy yarn and fabric things that i will need for "projects" I've always had pots thru-out my life.. so i had to adapt to things (without even realizing it) that where quiet and that well i could do laying down...people who know and finally realize that me laying down alot is just a part of life now.. and for the most part they have canned the comments of "you need to do more" or try harder"... as far as daily living goes.. (i ualify for home care but am not ready to accept that).. i try to do alittle bit at atime.. as it hard..but eventually gets done.. i dont quite exactly know how to word gettiing by. you just do... afew things taht are a must for me to keep me connected tot he outside world are internet-cable- and unlimited long distance!!everybody i know is long distance!.. good luck dear i hope that you start feeling better soon... hugs dizz

hi you domt remeber b/c of the drugs they give you.. I've had an upper scope done twice now after pots diagnosis.. the only prob i had was each time my pulse ox (breathing) was low in the 80's.. I was having apnea.. and was forgetting to breath.. but they would wake me up and turn the oxygen up.. but it was pretty uneventful.. and no problems after wards..you do need to have somebody drive you hiome b;/c of the drugs they give you... just let them know of your dysautonomia.. and you should be fine!!

hi sky welcome!! you will find great support here.. feel free to ask questions and vent your concerns.. we all do it..(i know i do!! ).. But knowledge is power.. and power in dealing with this illness is knowledge...I'm so sorry that you have PAF.. But on the other hand its good that you got a diagnosis and didnt go for a very long time with out one... take care dear and again welcome! dizzygirl

wow you all have done such a beautiful job on what has been put up on the sneak peak!!! corina girl!! you did a beautiful job on your cards my goodness!.. I'd get one just to frame and hang up un my apartment! you all have some talent that is for sure!! cant wait to see it all once its up!! dizz

I was on albuterol inhaler for quite some time.. they misdiagnosed me with having astma.. when infact i have a lung disease... BUT.. yes the inhaler does cause your heart to increaase... but it pumping the body up so you can breath... Um nebulizers do the same thing to me.. But I'd deal with the discomfort of the neb. so i can breath though.. there is a newer inhaler out _i'm sorry though I cant recall the name-- it was given to me last october when i had a bad bad case of bronchitus.. it does not stimulate the heart like regular inhalers doo.. its a real toss up breath or have tachy.. both are neeeded!! (thoughwe can live with out the tachy!

sorry dear taht you are dealing with the tachy monster.. it can be very scary sometimes b/c you wonder what in the world sets it off so fast.. just like that! I often have tachy spells that come on suddenly and last for days at a time.. I am on a bb that helps a bit now.. and the really fast HR's come out a blue moon whenever it wants.. i hope that you are feeling better dear!! hugs dizz

fellow hermit here!! I get to the point where i dread having to leave the house.. esepically if I'm really symptomatic (and going to the docs or something)..b/c it will either set off my symptoms or make them worse... and i hate telling people "i have to go or i have to sitr down " over and over... or if they ask me why I change "colors" so much.. i joke that i am a gecko... and i change colors to adapt to my enviornment..red. pink, deep scary red, purple, sometime blue, and straight up ghostly white.. witha tint of grey! I dont know I guess I've always prefferred being home then being out in about.. even before i got real bad off w/ things

hi i have raynaurds as well and i do take a maz doseage of a beta blocker.. and a low doseage of an aditional beta blocker..um i've never been told to avoid bb's... there are alot of bb's out there.. good lcuk finding something that works for you! dizz

hi folks.. i have a quick question.. are normetanephrine and matanephrine.. are these considered catecholamines as well? I'm thinking probably yeah.. b/c there is ephrine in the word.... I got records of labs from a few years back.. and these levels are considerably high.. but where not further looked into b/c it says " despite the fact that she "I" have a heart in excess of 170 beats per minute.. and she is allready on 100mg of metopolol twice a day... that they are going to let it go for now!" I was just looking for clarification on waht these are exactly.. thanks linda