dizzygirl

oh melissa.. im so so sorry to read that you have sepsis again.. and are back in the hospital..my prayers and good wishes are with you... holding you tight in my thoughts much love dear linda

prayers and healing thoughts are with you today.. I hope that all goes well and you are back up on your feet sooner the later.. llots of hugs linda

hey thanks for all the helpfull information! I had a sleep study done back in 2004.. which they said was fine..Uh to get accuratly tested... and positive results do i need to be having a flare up of these things? or can they dx it either way? i was on klonopin when i had my sleep study in 2002.. maybe that is why it was so normal! lol..

oh yes i am sick of antibitoic that is for sure! tho the one i am now is pretty gosh darn strong.. and wouldnt you know.. i got that familiar feeling of bronchitus brewing in my chest..once i woke up yesterdya morning! im like youve got to be kidding me ;/ tea..yes i often have fluid behind my eardrums.. when i go into the docs office im always like check my ears they are hurting again... and low and behold.. they have fluids in there.. i had tubes twice as a child...tho not as an adult..anestesia is not something i look forward too.. ugh when ive had it in the past i have bp problems and it makes me sick.. yuck.. there seem to be certain points in the year when iget more sick the other times in the year.. and it started early this.. year.. I was thinking this morning.. the change in seasons always always knocks me thru a loop.. espeically winter into spring... i have always always had problems with lots of infection and things.. but i'd say since 2005 i have had a harder time then usual.. just stuff pretty much all the time...in spring of 2005 i got really bad bronchitus which turned into pneumonia.. while on antibiotics.. and that is when things started getting worse for me ...pots wise too so i guess that is why i was wondeing if poor fighting immune system was a normal things for us..

finger and toes are crossed flop! good luck !

flop i have had reoccuring ear infection since i was an infant.. they said i would out grown bad ear infection.. and i havent!.. i still get them about 5 times a year maybe more depending on things.. I had bronchitus/strph in november and it took me 2 months to get rid of it! it was crazy.. and several different antibiotics.. nuts nuts nuts..

thanks folks.. its good to know that im not alone ! I do get the full body jerking when im awake as well as just before sleep.. But I think I know why i had them so bad the other day.. I have a bad UTI...and my system is in a tailspin... hopefully they will settle down in the coming days...

morgan thanks for the update! Ernie Im so sorry that you are in the hospital and have been in so long...your certainly are a rare bird!! .. I do hope tht your doctors can help you get back to baseline and get down to the nitty gritty of waht is going on with you.. can they by chance contact any of your doctors that you have seen here in the states? Like maybe dr. goldstein or something? big hugs hoping that you feel better soon ernie love linda

I was just wondering.. since october november.. I seem to be catching one bug after another.. I was wondering is this common for potsy folks to get sick so w/ normal illnesses.. on top of pots? or is it maybe more of an auto immune problem maybe? since october november.. Ive had multiple things..streph throat x'2 bronchitusx like 3,, ear infections.. too many.. along with a few colds- sinus infection..the flu.. and now a UTI.. Is this normal? I just dont seem to be catching much of break in between things.. thanks

i have been wondering about miss ernie too.. hope that hse is allright its not like her to be inactive on the forum for so long.. ernie let us know how you are dear.. Ive been laying way low in recent weeks... Im having alot of paralysis spells.. or wahtever these things are im having.. IM now wondering if im having tru periodic paralysis.. all the time i mean..and i do have documented low potassium levels... I have had some where my body goes limp.. but those dont happen often... instead my body get really really really stiff.. when i cant move.. Im wondeirng if im having seizures or something.. more periodic paralysis.. only b/c some of the things going on dont quite fit into the mold realy well of pp.. I havent been posting much either b/c I feel like im a broken records rambling about the symptoms over and over.. and it get kind of depressing after a while.. same stuff with still no answers or real treatment.. errr --effective treatment i should say... but ive been thinking of you all tho and wondeing how you've all been! hopefully--miss emily-- i will feel llike a jabbermouth again soon.. i see your leaving me in the dust.. just kidding! :0) silentjabberjawsigningoff

im so gald that you where able to enjoy yourself.. dinsey sounds like a blast!

hello alll.. i was wondering,, as im sure that some of you get this? do you get episodes where your body just spontaniously jerks? I dont quite know how to describe it other then that? I keep going into these full body jerks.. then they make me really tired afterwards... Ill go to where i'll get a few in a row..and it will go on like this for several hours...i get it in my sleep or as im falling alseep i should say..too.. Just wondering if any of you get this.. and maybe waht is it? and waht do you do to stopit? I found today I had them really bad.. and i got really cold too.. and was shaking uncontrollably from the inside out.. along with the jerking things... and that.. i got unbelievablly tired.. and went into this like sleep that was more like a coma.. for nearly 5 hours.. and once i woke up my skin felt onfire.. and i was tachy.

flop.. oh my i have to really really disagree with your cardio... that is the most obserd thing i have ever heard!! ... OK he is wrong.. now do you need your cardiologist on board inorder to get a wheelchair? can you PCP handle this for you.. and the other professionals that are supporting you in this..? I have a powerwheelchair that i use as needed.. i use it when i go to medical appointments..groceryshopping- mall-` stores-ect. i also use it around the house alot on days when im unsteady and am in fainting mode.. and when my pain levels are high and i cant walk b/c of pain..But i dont use my chair day after day.. i can go several days where i do not need to depend on it at all.. or several days where i absolutley need it 24/7.. Now reason i aksed if you PCP can handle the wheelcahir business is b/c my pcp is the one who got the ball rolling for me.. and the then my local cardiologist..pcp.. and dr. grubb's office wrote letters supporting and explaining my medical conditions and my need for a powerchair verses a manual one.. the insurnace company sent me to get an evaluation done by a Physical therapist... and i was having an extremely bad day... and my bp was proof positive....of needing one.. and the PT eval was in my favor.. I really hope that you can find a way around the cardiologist.. sorry your dealing with this.. and i hope that your head is doing ok.. sounds like a pretty nasty fall you had... hope you can find a loop hole hugs to you flop linda

amby i can relate to waht you are saying.. a few years back i was admitted to the hospital.. and they let me get up to brush my teeth.. welll from the time it took me to stand and walk to the sink less then a minute my HR shot to the 175.. just brushing my teeth.. that was on bb's too.. and another time i was doing dishes.. and i got icky feeling and checked my bp it was 54/something i dont quite remember what.. but it still surprises me sometimes how normal activities make our pressure's drop and hr soar.. hope that your new med helps you feel better soon dear!

i have alot of leg/bone pain issues.. um some time back willows and i had a post going.. i think i started it about pain issues mainly being leg/bone pain i think i will see if i can find it the link.... One thing that i have found very recently that offers a teent tiny amount of relif is knee high compression hose 20/30 compression... if i wear them during the day.. on a day where the bone pain is absent and its just a potsy achy thing going on dur to blood pooling.. i ve foind these littl boogers to offer some relief.. and ill take any that i can get! I have no clue what causes such horrific pain.. but i ever find out i wulll surley let the lot of us who have this know!

uh getting a wheelcahir for me was the best decision my doctors and could have made.. it aloows me to get a little bit more....while if i didnt have a powerchair to use i would not be leaving the house .... Um i got my powerchair b/c of dizziness.. and uncontrolled pb and hr.. while getting my PT eval my BP was nuts 150/0 and my Hr was soaring high.. i was on the verge of fainting.. Its a though diecision to make b/c emotion and physcially... advantage of the powerchair is it saves/conserves energy for me... makes it easier for me to be able to get out and about.. i have reclinable one so if i need to recline while out i can.. disadvantage.. is if you have to pay out of pocket for a powerchair (i got a powercahir b/c my hr is still wacky on bb's and my docs didnt feel my body could handle the stress of wheeling myself around) it is quite exspensive.. my powercahir cost about 7000 dollars.. but my insurance thankfully covered the cost of it all.. and it was pricier b/c it is a really nice one and it is reclineable... also wheelcahir transportation is exspensive as well.. here in the state.. my medicaid will cover lift ransportation for medical appointments.. and there are other organizations that can help with the cost of a lift vehicle.. But over all.. if you feel you need a wheelcahir to help you.. i would say go for it.. and prefferrably a powerchair or scooter too. b/c its just so much easier on your body.. I love mine..i was a bit "off" about using it at first.. but quickly got over it... good luck to you

thanks everybody for the info... I just spent the past 40 minutes trying to type a reply.. (i had to keep laying down..).. only when i went to post it my computer timed out and i lost my enitre post.. so until i can muster up some more energy to type everything i just typed.. i wanted to let you know IM feeling abit better in regards to the strpeh throat alone.. these antibiotics tho are really knocking me thru a loop.. i cant put my finger on reacting this way before like this anways.. or the past 2 times i had streph thorat.. its just knocker me off my rocker.. good news is tho that i can now swollow a bit better.. and i can breath out one of my nostrils! YEA! lol but i will type more later b/v i have q's and stuff.. tootles for now froggygirl

miss green girl emily~ i can be a green frog! lol.. i normally have a rough time with antibiotics.. but this particular time is unreal! it is like affecting my breathing.. and I know thursdaynight after taking my night dose.. i got this weird flushing across my nose and each side of my face.. it reminded me of a butterfly ...it was quite strange... But I had the inital blood test done for lyme and my pcp at the time said that it was negative.. and in order for me to see one of the only 2 lyme docs in the area.. i have to be refferred there by my pcp.. and he wouldnt referr me b/c my blood test cam back negative... so im going to talk with my new pcp and go from there.. But yea i live in pa.. and i grew up in a wooded/country area... and right next door to a small farm with horse's.. at one time cow's and stuff and other barn yard critters... I dont remember having a bullseye rash...but i remember my dad telling me to be careful of tick bites...but i alway seem to be breaking out in a rash of some sort for some reason.. so many i could have ha d a bullseye rash and just not remember b/c i always seen to have one.... I dont think investigating lyme is a long shot for me to pursue.. its just getting my doc to get me the referral i need.. i do have several things or alot of things that do not fit in the pots molding... but i have always had a problem with antibiotics even before i got dx'd with pots.. thanks for the info!

Im on antiobiotic again for another bout of streph throat.. I was just wondering aside from the obvious..fighting infection..why do antibitoic knock us thru such a loop? I sometimes wonder what is worse the actual infection itself or the anitbiotic's we have to take to rid our selves of the infections.. all i know is this particular time around the antiobiotic are jitting me aharder then normal.. and i feel seriously green and way way potsy.. i have had really bad chest pain since saturday... UGH what do you all do to help manange with antibiotics so your pots doesnt knock you on your buns? amajorlygreendizz

hey amby.. norpace is a bb? or calcium channel blocker? I do believe that i have been on it as the name is ringing a bell.. but as far as how i did on it i dont quite rember.. but i hope that it helps you and that you have sucess with it dizz

i have had upper and lower scopes done and a kazillion of other creepy tests done for GI stuff.. only to come up with no real answers! I had my first colonoscopy at 17 i think.. since 17 i think ive had 2 colonsocopy's and 3 endoscopy's...they have done these to rule out what not really sure.. but symptoms wise uncontrollable vomitting and diarrheea played a big part as well as bleeding issues.... most tests done before diagnosed with dysautonomia.. and once i was diagnosed the last colonoscopy i had done back in may 2006.. the gi doc told me that POTS DOES NOT afeect your tummy! i was floored like yea ok there doc.....tell that to all my potsy friends!

rachel hi... Um do you by chance have medicaid as well as medicare? It been my experience in the state that i live in the i dont believe medicare has ever covered any of my compression hose... but my medicaid has.. I recently found out when getting new hose.. that medicaid will cover compression hose in full.. and that they will also cover 2 new pair every 6 months with perscription of course.. and its covered in full.. Im not certain of how it works in goergia.. but if you have medicaid i would call them and ask the of coverage in your state good luck dear i hope that you get something figured out

Maxine....Im soo soo very sorry to hear that your mom passed away yesterday....I'm glad to hear tho tht she finally got some real pain relief and wasnt suffering like she was...that is a blessing in and of it self.. You take extra good care of yourself during this time and the days that are going to follow...I/we are here for you dear my prayers are with you and your family much love and many hugs linda

dont worry emily!! knowing all of your basis is the best thing to do...

just my own thoughts on the topic.. but i know that gardasil is anew vaccine.. but im kind of glad that there is one now available.. b/c i mean look at "some" of todays younger people.. they are becoming sexually active so very young its mind blowing...and with some many partners.. I know for myself i have really thought about getting the vaccine.. only b/c full blown cervical cancer and the cancer cells runs in my moms side of the family.. all of my moms sisters and grandma i have either had cancer or cancer pre cancer cells at one.. some at young ages.. I dont know if there's is caused by Hpv.. but who knows..that is like my reasoning for the vaccine.. not so much based on sexual activity...b/c i was was getting screened for cervical cancer LONG before i ever became sexually active.. so chrissy i agree should look at the risk involved and talk openly with her mom and doctor and do the research.. and make and educated and informed discion...that really only she can make and follow thru on..