dizzygirl

Oh yes i am extremely greatful for the help that i will be recieving.. it was just kind of like one of those moments .. where you cant believe that you are at this point.. its amatter of accepting what has come my way.. deal with it grief with it.. (as i feel likeim having to give up more. does that make sense?) and then move on..... while the eval was depressing... i am greatful so very greatful for some help coming my way...its a mixed blessing kind of thing....it will be nice to have a cleaner apartment.. not that im a dirty critter.. just an exhausted cant keep up dizzycritter!

I realize that what i am about to post.... that I should be very thankful for.. as i know alot of folks here are in the same boat that i am in.. WHile i have been in limbo now for 9 months or so about long term in home care.. the ball finally really got rolling.. I ve met with a coordinator thru a program here in the town i live in... and then today. a lady from the well Im not sure where she is from.. But she is in charge of doing evals and assements to qualify folks for either Normal in home care or nursing home levels of care... well after going over what my pcp submitted and meeting and evaluating me.. she said that I qualify for..(cant think if waht she called it).. she said that i qualify for a nursing home level of care... that if my doc really pushed the issue that I would be eligible to placed in a nursing home where i'd could recieve 24 hour care.. i was like holy crud!!!! i told her there is no way on god green earth that anybody is puting me a nursing home.... that is just nuts... I told her that she's have to bring all the care and services to me first.. and id have to be ALOT worse then i am now..(which isnt that great)... But she was being honest and explaining to me what this stuff meant..... Good news being that there is no way now for me to get denied services.. which i am very very greatful for.. b/c im barely keeping my head afloat... I know that you all would understand my mixed emotions on this subject..im extremely greatful.. but deeply sadened at the same time b/c i know that my level of function has decreased greatly... and I am a very independent person.. so it has been particularly hard for me to ask.. let alone accept help..... thanks for listening

thanks bee for the link

yeah get a blood volume test... I am scheduled to have one done at the cleveland clinc here shortly.. it is my understand as others have said that you have have normal labs results.. but still have hypovolemia...

im on the bb's betaxolol (40mg) and clonidine(.1~~ 3 times a day).. and for wahtever reason.. be it my dysfunction system or the meds themselves.. my BP rises some days on these meds 150-160/90-103.... and other days it just is low low low.. its good tha the meds help your pots.. but i wouldnt call havig to deal with the sdieeffect that you feel paralyzed a good feeling.. or one that you have to deal with.. there are LOTS of beta blockers out there.. amybe you could try another one.. and hopefully that one will not cause that kind of reaction.. goodluck to you

geesh! sounds like that neurolgist needs his freekkin' head examined!

sophia thank you for posting and letting us know... jan I am so so very sorry for the loss of your husband...I am crying for you right now as i read this post...my prayers and support are with right now and in the future..please taek care of your self love and hugs linda

i dont know if it is part of pots... but i do know that i get itchie attacks.. and creepy crawly feeling.. there is a difference between the 2 feelings itchie being well you itch and creepy crawlies you feel like ther are teeny tiny criters running all over you..UGH.. adrenaline surges! Im I used dye free benadryl for when i get itchie or crawly feeling.. sometimes i feel this way when i am ahving an adrenaline surge in the middle of the night.. and i get fidgetty some times as well.. and the benadrly helps with that..helps calm my sysytem down and makes me sleepy also along with those things above.. i get over heated when i feel like this.. and i've found that aveeno oatmeal soap along with cool even cold water.. sit i the shower and just let the water run over you..(if you are over heated.. this helps me).. but for wahtever reason it helps the itching and stuff stop. hope that this helps take care

OMG!!!!!! Wilbur is so freakkin cute!! I love the ears on him.... toocute.. Im very happy for you and the new addition to your family..!!! :) happy kitty proofing!

oh boy.. im so very sorry.. jan please know that you both are still in my prayers.. take care hugs linda

you know you have dysautonomia when..... your doctor walks in your hospital room and says that you look "energetic today".... b/c you are sitting up in bed

sophia im alittle late here.. but i hope that all went well.. and tht you are recovering ok.. take care

before i started the somewhat RIGHT med or any med atall.. my rate would go as high as 240 upon standing or resting rate. with meds.....I can still run up 200 but avaerage rate is anywhere these days from 45-`175.. depends on the that day..

good to see you back morgan!!

um i had a bad experience with this med.. it made feel like i wanted to crawl out of my skin.. and it made me very very aggitated...

hey persephone.. I was on cymbalta for a while.. it helped a bit with my bone pain.. but the side effects far outweighted the relief that i got from it.... its a shame that the side effect where so rough.. b/c once the nausea and stuff wore off it the middle of the night I would sometimes get burst of energy.. and like i said it did help with the bone pain to a small degree from the get go when i started taking it.. I had severe nausea.. and it caused extreme weakness thru out my entire body as well... I believe i started out on 60mg a day.. and went down to 20mh or something like that by the time i went off of it..i was on it for several months.. and everyday after i took it.... i felt like that.. I would talk to you doc and see if these side effect (which sound horrible!) are going to go away. or if this is waht you can expect from the med after taking it.. good luck girly i hope that you can eventually tolerate the med and that it helps you... hugs

while i dont think that high stress levels can "cause" dysautonomia.. I really feel that it can tirgger or spin things into an even more uproar. ......in regard to pots symptoms... I know that for me.. growing up I was in a constant fight or flight mode due to family dynamics/dysfunctional behavior..... I have had pots my enitre life.. and i can attest to the the increase in symptoms when things where rough.. BUT I dont think it is the cause of my pots.. i think that it contributed high levels of stress to my body that trigger or helpded along faints or crashes thru childhood and teenage years.. i can understand katherine's point in this being a senstive issue for alot of folks.. I know that I for one.. fought the "its all in your head" "your stressed out" "or that i had to work out """ISSUES"".. or just plain out and out was a crazy person who was manifesting these symptoms as part of a mental health disorder.. I fought long and hard to be taken seriously.. and I no longer have mental health diagnosises..... But i remember the few time i was taken to the er and was "evaluated" or sent to the psych ward b/c THE DOCTORS COULD NOT FIGURE OUT why my heart rate was 200bpm.. so there it must have been anxiety!.... i know that even now that i have docs who take meseriously when i run into one that pulls the OH its just stress card.. that i get very defensive..

Amy Im so glad that things are going well for you!!

Nina im glad that they are helping you that is great! I had tubes twice as a child.... and about 8 months ago i went and saw an ENT about tubes and my always occuring ear infections... what a wiennie he was.. got no where obviously! But i really am getting tired of dealing with this ever few months or so.. geeeeeeeeesh!

mmm.. tachy to me means of course a rapid heart rate.. but (i can have a rapid heart rate that doesnt bother me..) if i post that i am having tachy.. it generally means that my HR is over 120- 130 beats a minute and it making me feel like death warmed over.. "tachy" doesnt usually begin to bother me till it reaches higher then 120... i wish you good luck on your holter monitor..and hopefully they can catch what is causing you episodes..

just a mini rant here folks.. as i saw the doc and my ears both of them are infected again!... I just got over the same thing less then 2 moths ago... and i can honestly say that its driving me nuts... the little bit that i do get to walk around.. the floor is doing the WAVE.. it feels like its moving.. and so does the bed and the couch...my mom helped me put ear drops in.. and i seriously thought i was going to puke.. and my bed was spinning SOOOOOOOO bad... that isnt even cool on any level! im so annoyed.. so here i go on antibiotics and ear drops once again.. and if pots wasnt in enough of an uproar its really kicking up now.... GRRRRR.. dizz is not liking tha dded dizziness and i have to stop taking the diamox.. b/c that feeling of my lungs and chest being wet and the trouble breathing was caused by the diamox.. and that was so scary... so now its back to the grawing board i guess with that paralysis crud as well... a verygrumpydizzidizzygirl

hmmm.. i feel your frustration.. i really do I know that for myself.. that i have had symptoms of pots since as far back as i can remember... i also remember that the symptoms that i had as a child where brushed off as "growing pains" or that i was a nervous child.. and as i was a teenager... they told me that i had adolescant adjustment disorder and an anxiety problem... that anxiety as they called it.. was inf act not actual anxiety.. but adrenaline surges... and the tachycarida was not stress it was POTS!! I was 20 years old before i got diagnosed.. and i lost of count of how many docs i was taken too trying to figure what was wrong.... sicne getting diagnosed.. i have been fortunate enough to have been seen ands treated by really treated by 3 specialist and 2-3 docs that are familiar enough with pots to take a stab at it.... I think that pots is not "as" rare... as people think..its often misdignosed.. for other multiple disorders.. I think that it is not fully understood.. and the public/medical community is undereducated... and that if docs where more educated on ANS?dysautonomia.. that we would be seeing an out pouring of folks with ans dysfunction.. I think there will come a day.. when that day comes i dont know.. but there will come a day when pots... is known and is taken seriously.... and given props i guess for the disabling way that it affects a person.. remember that MS and diabetes it too was un heard of at one point.. and it now get funding and is recognised as a real problem.. by all of society and the medical field... I know that it does not help us suffering with it now.. and the ignorance of people and med professionals...and the ones that do get it are so over booked/loaded with patients anyways just wanted to say .. I understand and vent all you want!!

my pcp calledand had me stop the diamox.. i ddint have it today... and the tingling in my lips and face stopped.. really wish it would stop in my feet and leg.. as it is downright pain FUL! I still feel like everything is wet.. and feel as though i have to work at just norm breathing.. i go back to my pcp in a few days.. woke up this morning sick.. with some flu cold type thing.. and feel cruddster..yuck...iactually thin bronchitus is setting in.. Oh joy.. here comes the cycel of winter crapppyiness...i get it non stop it seems in winter spring summer months... knock on wood i havent had it since september... so i lucked out for a wooping month free.. no wonder i have barely moved from the couh or bed in 5 days.. wheeww

YOU GO GIRL!!! wow again.. Im so proud of you!! you have conquered so much and accomplished so much too.. you continue to be an inspiration to me!! again very cool that youve complete the masters degree.. wow!! I certainly hope that you treated your self to something indulgant for a celebration!! congrats! hugs dizz

ernie--i have been on the diamox 3-4 days.. and i dont mean to sound like a real wimp about it.. the side affects.. but holy crud.. its unreal melissa... EWWWWW pneumonia is really not my idea of a good time... Ugh I had it here back in may of 2005...and it knocked me for a loop... Im calling my pcp again.. as its worse this afternoon.. and heavy.. ugh.