dizzygirl

Ok.. so I've been getting really bad chest pain.. i've talked to my cardio about it.. and its related to my pots.. he said unfortuanly there is nothing that i can give you to make it go away.. he said to just la down and wait for it to stop.. problem with that is.. it usually lasts for days at a time...and i get weird pain ful heart beats when i get the chest pain.. and the heart beas make me feel more faintier then i normally feel.... as of yet i have found nothing that offfers me relief from this. what do you all do to allieviat pots realted chest pain??

hi all.. i was wondering.. for a few months now.. I have ben having bad breast pain.. the right one being worse then the left one... I recently got a new gyno lady doc.. and she actually listened!! But on exam there where no jumps.. but there are changes occuring primarily with the right breast.. I've had labs done and been checked a few times now w/ breast exams... they checked for infections or something that might be causing it.. and everthing on that front was negative.. and they thru in a pelvic ultrasound for good measure.. that too of course was negative..so was the pregnancy test that was negative as well.. Now while talking to the doc she mentioned that she wondered if maybe with my dysautonomia and all the other weird things i have going on if possibly my pots wasnt causing this weird symptom.. then again maybe not.. they are sending me to a surgeon to rule out a lump that might be deeper in the breast muscle..( that i actually am a bit concerned about.. as my grandmother had breast cancer when she was about my age ) but after that they are out of idea's.. and again was wondeing if it might be a new symptoms of pots.. i realize that you all are probably thinking I'm a looney bird.. but i thought i'd see if any of you have experienced breast pain that was unrelated to anything.. (and that lasted for months!!!!!!!).. and had been told it might be your pots causing it?? thanks

lauren i had to crack up when i read your pj comment!!.. oh how true!!.. I own some many PJ"S.. it isnt funny!..my dressers arent full of "normal" clothes.. its jull of jammmies.. and heavy slippersocks and wool hunting socks (though not very attractive.. but incredibly warm if you where them in addition to 2-3 pairs of regular socks... ) and the bedding thing i had to laugh.. b/c I have so many blankets.. I have 3 comforters.. 2 quilts.. a big heavy fuzzy moon/star blanket that i just had to have b/c it was fuzzy and warm.. and a micro fiber or something blanket.. along with mutliple throw blankets if needed.. and yes i cover up with them all in the winter..oh yeah then there is the bed sheets.. hahahaha.. this thread is too funny!

geesh! what a creep! sorry you had to deal with people ignorance dear! feel beter hugs linda

yeah my thought was of the med that persephone mentioned.. my diastolic numbers have been 0 many times.. and in the low 20's other times.. my norm diastolic runs between about 45-60.. Um have you tried compressions stockings? and can you increase you florinef? maybe you meds need a bit of tweeking... your body could be not responding to the doses that you are on right now.. i know you've got to be feeling yucky with low bp..hope that you feel better

HI.. I was trying to get set up with angle flight network.. for an out of state appointment.. they got nervous when i told them that i would be traveling alone..b/c i do faint/blackout and have seizure things go on.. they spoke with my docs nurse.. (as they needed my cardio's ok for me to fly) and my doc flat out said no..b/c hea;thy people even have trouble flying..that and it will be a nonpressurized plane.. SO now i am wondering How I'm going to swing abus and or train ride to NYC in 2 months.. I have not checked into a train ride yet.. but i have checked into a bus ride.. the shortest quickest trip is 16 hours.. almost 17 from where i am.. and I cant do a long bus trip like that.. I'm nervous about that..i'm having trouble doing just like a short 20 minute ride around town..i cant really imagine a17 hours bus ride sitting upright or standing the whole time.. OMG! that just exhausts me thinking about it...ewwwww. and a train ride i could probably get a sleepycar or something.. but i was told that its exspensive.. and I'm guessing would take about as long if not longer to get into NYC.. i was really hoping to fly b/c i would be so much quicker!! I thought about trying tto fly commercially instead of thru angleflight.. but my doc has good reasons for not wanting me to fly..so i dont know... i do know its going to be a LONG trip though.. crud... RATS!!!!!!stinkin' pots.... any travel suggestions would be nice!!

yes iget to crave salt.. usually in the middle of the night.. drung my salt craving i chow down on green olives... when i'm craving salt really bad i usually eat about half a jar of olives!.. then follow it with milk.. middle of the night salt cravings usually are followed with milk cravings..

ive had pots for 24 years.. going on 25.. i wsa diagnosed 4 years ago..

HI!!! what part of the brain are the lesions on? you allready know that i have a lesion on my pineal gland..(jury still out on this but hopefully not for much longer) also..Any chance you'll hear back from the surgeon before head off for you appointment? Maybe this can help explain why you have had such a set back (or somewaht explain I mean) on such a set back... hang in there.. and I hope that you get some answers and help/relief soon dear.. take care.... big hugs dizz

morgan i hope that this pacemaker will help you to feel a bit better.. and not so cruddy all the time!!

hey there persephone.. i woudlv enture to say that the uti and the antibiotics are mnaking you feel worse..i know i'm still on antibiotics for a bladdr infection myself. feel better soon dear!!!!!!!!

glad that you are finally starting to feel a bit better melissa... !!!!!!!!!take care hugs dizz

nope your not alone dear.. i deal with this also often...

love the new add ons! so very funny! and so true! too..

hahaha! persephone that is too funny!! i got a few to add as well.... you know you have pots when.... ~the admitting staff at your local hospital recognizes the sound of your powerchair.. and knows it you before they see you.. ~the fact that the admittting staff can recognize you just by your face.. and ask you how your pots is doing? ~when you friend or family has to sign your name for you b/c you forgot how to spell it.. ~when the IV team nurses draw straws to see who is going to try starting a line on you..

hi folks yesterday morning after i woke up i went intot he bathroom to brush my teeth... suppose to be a simple task right??? NO NOT REALLY IN POTSY world! So i was rinsing with listerine.. then i brushed my teeth.. rinsed again... only as i was rinsing.. my throat started making these sponaneous noises...( that i normal get a shortly before i paralysis or faint.. or somethings just because).. while anyyways.. my throat started doing that...as i was spitting out water.... and next thing i knew.. a drop.. just like a drop of water.. went down my throat.. as my crazy throat was doing those noises...and i started choking.. on a drop of water.. that blows my mind.. but anyhow.. i was choking on the drop of water.. and i could not breath..and i could feel my esopaugus thigtening... one thing lead to another.. and i started vomiitting.. meanwhile the vomiting was making it even more harder to breath...it was like my throat was just shut down.. and my lungs started to burn really bad.. like they used to.. when that witchie gym teacher in middle school woukld make me run the mile.. UGH..but there was burning in my lungs... and i started to see these yellow (i call them lightening bugs) and black dot things floating around my eyes and and head.. and my vision started to dim and get that black ring around my eyes.. the shrinks in around you..i was on the floor at this point... still throwing up..and still not being able to breath...I actually am not certain if i blacked out or not... but i do know that after i got the ring of darkness that.. after that i stopped choking and was able to brath agin... not done with freaky throat things but i could breath... after that.. for the next 45 minutes or so I as burping alot.. and that burpping lead to you guesses it!! more vomitting! then the rest of the on the couch.. feeling totally ill.. my question for you all.. do any of you get funny noises coming from your throat..that are spontaneous? meaning tht it just does it? and why?? thanks for listening to me vent and ask my questions.. was kinda of scary yesterday.. that has happened ebfore but not to the degree that it did yesterday.. yesterdays was bad...and more severe

i am really sensitive to noise as well...(i need to pretty much be in the dark and total silence suring the day till i feel "OK" for stimulation) did they give you ear plugs? I know they dont muffle the sound very well.. but something is better then nothing with all that racket.. i hope tha you feel better soon.. and that you get some answers as a result of the tests today.. take care

HAHAHAHAHAHAHhAHAHA! OMG!! that is too freakin' funny! lol. i can think of way TOO MANY PEOPLE that i would LOVE to sell my pots too.. you all are too funny..

sleeping!.. on good moment i try to listen to the radio.. or tv.... one more functional days.. i crochet or talk on the phone /get on computer... but ernie posted a very good link on a topic we had a while back on beating bordum.. you find some neat idea's floating around in there.. best wishes to you

i've been on toporol el and the regular toprol.. as well as metoprol.... they ddint work well for me.. i was on high doses of all 3.. i hope that you find a bb that works well for you...

I used to be able to drink gatorade by the gallons.. early on in my pots.. but over the last 7-8 months i developed an intolerance to the sugar and the red dye in gatorade... if you are worried about the sugar. you can always dilute it with some water or ice cubes.. i've found that i can tolerate the orange powerade---not gaotrade... but only if i dilute it with water and only drink small amounts in a day of it... good luck

em.. hi dear.. i got tinker bell jammies at walmart.. i've got light wait ones.. (thenew ones) which im sure ill wear year round.. then i have heavy thermal like tinker bell winter jammies.. that i got a few years ago.. also at walmart (along with betty boop and scooby doo!! lol).. which incidentally over the past month i have worn alot b/c ive had the freaky i'm freezing my buns off and cant warm craziness going on..in 90 degree humid weather!! what a wacko i am !! sorry bit of a ramblong on pj's there.. but I love them!! comfy is deal... how i got help..this has been an on going struggle for a few years now acutally.. you know pa they dont pay for jack! this past winter when i had in home health care.. a social worker came out and talked with me and eval'd i guess what i need and an aide was like #1 on the list...there are agencys that work with disabled persons.. where i guess they get grants or something.. I m not sure that its thru the actually medicaid paying them (though i'm not exactly sure on that either) my mind is a bit froggy on details.. but here in the town i live in we have voices for independence and commnity resources.. 2 agency that provide a HUGE support/services for people who need it.. I know that about maybe a 1yr or 2 yrs ago.. i was searching for help and i didnt qualify..(but i ddint know of these agency then either..) Oh one thing i do know for sure.. is that your pcp doc needs to fill out some forms stating that you are indeed in need of care/help... explain your health issues things like that.. Um i would start with maybe calling a home health care agency in your area and asking to speak with a social worker.. and ask her of any know agency's that offer services like ei. aides or transportation.. things like that...let me know what you find out k....and i do know that if you have a social worker helping you with it the forms and stuff that it goes more smoothly.. and they can work thru the loop holes and stuff... good luck..... Im feeling abit better today.. my mom told me i still sound groggy.. but a bit better.. not so tired sounding.. though i sleep more then anything!! darn bladder spasm HURT!!!!!!! i've found that the levsin helps with that though...kills 2 birds with one stone works for me! thanks ladies!

nope your not alone on this one.. i often wonder if i'm fainting in my sleep.. b/c i wake up feeling like i feel after fainting..i know it might sound a bit weird but.. i think it possible.. ive fainter laying down while being awake with is freaky so why not do while im sleeping too.. crazy bodys we have.... i havent mentioned it to my doc but.. i "think" its possible...to faint in your sleep.. look at how low your bp can be first thing in the morning. imagine how it gets during the night..

oh my dear i hope that you are better soon and out fo the hsopital soon too hugs

you gals are all so sweet! Luv ya all! I just got home alittle while ago.. I was pretty dehydrated... i had been basically unable to pee at all.. just some trickling..and had been like that fotr several days.. here and there.. but i felt like i was constanlty going to pee my pants and had to pee badly but couldnt... My pots has been in a serious uproar in recent weeks (more then the usual junk i mean) But long story short... i was quite dehydrated..(due to regualr stuff and the inner ear infection.vomitting.. multiple infection and fevers/nightsweats).. i was informed kindly by nurse last night that if i ddint start peeing soon that they where going to have to cath me... I was like OMG! so after them running fluid in me for about 15 hours.. i finally peed about 250cc.. I'm greatful that i was able to tinkle.. geesh.. i'm still having trouble urinating but not as bad.. will have to watch my bladder function..but i also have a bladder infection on top of things so i am really hoping that after finising the anti biotics that my bladder will return to it former not so great functioning self.... But i do have a bladder infection. a yucky yeast infection (from the antibiotics to treat my inner ear infection!!) and i still have a sinus/ear crud going on.. and will be on antibiotics for the next 2 weeks or so.. ontop of a few more doses of med for the yeast stuff.. as we are treating my current infection.. then the likely infection that will come from being on antiobiotics for an additional 2 weeks.... mypcp was like sorry kiddo..... i noticed that after i was able to start peeing that my agony of lower back/hip pain started to subside...alittle bit... I still feel quite "wonky" as persephone puts it..(lol).. and not very well.. I've been sleeping a great deal my body is pooped out... good news though...i found out this afternoon that the agency (that i totally forgot i applied to ) has an adie that can come help me.. the social worker told me today that the aide would be able to come help me a minimum of 20 hours aweek.. and possibly more if the coordinator think i need it..(the adie) will be able to help with house hold stuff and grocery shoping.. errands that i have an incredibly hard time doing these days... i was so greatful and happy (kinda of sad too that i've come to this poiint).. but over all relieved and happy..b/c i really do need some help... emily.. i had to laguh at your pj comment.. i ddint n take eeyore pjs but i did take my new tinker bell jammies! they are cute and purple...Im not able to spend as much time on the foruum these days as i'd like too and used too.. there have been alot of newbies on and some post that i just dont have the energy to respond too. but want to!.. i'm surpirsed that i'm still in the top 10!..i'm not on as often as before.... but wanted to update you all.. not feeling great.. but hopefully on the upside of things now.. the normal things i mean.. lol... luv and hugs all dizz