dizzygirl

LING!!!!!!!! Congrats on your baby girl.. i know you where so very excited to see her and hold her.. congrats on your miracle baby dear!! I am so sorry that you had such a rough time after the delivery.. that had to be horrible.. BUT im glad tht you are improving now... you hang in there and enjoy your baby girl.. britney.. i like that name.. glad you both are ok.. we were all worried about you both luv and hugs dizz

hey all I was wondering have any of you ever experienced a sensation upon normal breathing.. let alone any other kind of breathing .. where when you inhale or exhale that it feels wet? In my lungs ans chest.. my breathing feels wet.. i dont know how other to describe this freaky feeling.. other then wet.. and a real effort to breath.. like i really have to work to just breath... Im afraid that i hit a pretty nasty potshole.. i went to my pcp this afternoon.. and he listened to my lungs.. and waht not and sent me for a chest x-ray and some labs.. this all started saturday night i think..the potsy crash.. and i started a new med diamox sunday morning.. then shortly after that this nreathing started going on and has gottne worse since then.. like i said this evening my pcp sent me to the hospital for axray and labs....he is afraid that the diamox is cuasing dehydration.. and the diamox can cause the feeling that i have to work hard to breath.. though im not sure about the wet feeling upon breathing..and im set up to see a pulmonoligst.. as well.. between the crash and this new med.. i feel HORRID!!!!!!! YUCK...feel extremely fatigued and ver weak.. body feels like silly puddy that has weights attacked to all the limbs.. OYE! any input on diamox users or this freaky breathing problem would be appreciated dos this rollercoaster nightmare ever end? thanks

yeah.. my doc said that this would help level out my potassium levels... I'm going to give him a cal here shortly.. But all i know is that med was rough yesterday.. I'm afraid to take it again! i have an appointment with my pcp this afternoon.... So i will ask him for a lab slip to check out the potassium levels... I so hope that i can adjust to this med..

(((((((((whistling))))))))))))))))))) I started diamox today and holy crud.. i havent been able to get my buns up off the bed or couch hardly at all taday...I tireid checking my BP several times and it would not register on my BP machine.. so im going to call and see if i can split the pill in halves or quarters and work my way up to the low dose.. it made me quite hypotensive today.. do any of you who have been on diamox.. notice that it really really fatigues your muscles?.. makes the bod feel like silly puddy that has cement weights attacked to it? Just curious as the past few weeks I have REAALLY pushed myself.. and im not sure if it now catching up to me.. or if im now starting to crash from my tilt.. or if its just the meds adjusting.. or all 3.. thanks for the heads up on the fizzy pop.. while i had no problems drinking it...no funny taste or anything.. burping it up was a COMPLETELY different story.. EWWWWWWWWW is all i have to say on that note.. how gross...for those of you who has taken it.. i know you know what i mean!! YUCKY!!!!!!! no more grape fanta for the dizz! backto bed i go...

the pharmacy i go thru.. ECKERDS.. it is about $135 for I think it was a one month supply.. taken once a day..

hey jacquie--sorry that you are having the dreaded tachy problem.. UGH.. forgive me if i you have posted this and i dont remember... ...have you had your catecholmines and adrenaline levels and waht not tested during one of your flushing-tahcyardia attacks? is there a certain time of day that they happen.. so maybe you can get labs drawn during a spell.. I know much easier said then done...I guess waht im asking is.. is there any way that you can be given a lab order to take to a lab or the Er.. and have somebody drive you there and get it drawn? or could the lab come to you? I know the lab people have come to my house many times to draw blood.. just a though.. as i feel bad that you are dealing with this.. i know how you feel girlly! hang in there hugs dizz

amy--hey congrats on getting fluids done at home.. that is great.. good luck with the picc line and working the pump and stuff..my friend who also has pots.. has a piccline and uses the pump.. she said that it has a difference in her fainting.. and help give her a bit of a boost... happy dripping dear!! hugs

HOLY CR** MAXINE!!! I thought you said 51 episodes in a night...(forgive me if i missubderstood you the other.. i was having slow brain day).. 51 episodes in an hour.. geeesh!! thats nuts.. let me know how it goes with neuro and stuff.. OK!!!! I hope that a c-pap machine will help you get a most restful sleep.. and tht you might feel better and a bit more energitic!! hang in there ju ju... luv and hugs dizz

Hope that you feel better katherine!

wow carmen that does not sound good.. goodness..I'm sorry that you cath had to go..and that you got so sick.. I hope tht you are not on the upward swing of feeling better.. gatorade bottles up!! take care and feel better BIG HUGS dizz

hey jacquie.. I'm sorry i dont have any suggestions for you.. in regards to flushing and night sweats.. but wanted you to know that i am hoping that they figure it out for you.. and that you eeg goes ok for you.. hang in there girl.... hugs dizz

thanks everyone for your support! Marnian.. may i ask waht kind of weird side-effects?? dr. g told me that the side effects "shouldnt" hopefully really bother me...

hey ernie.. well that sounds like a good plan... I think its a good idea to give your body a rest for a bit..give it some time to recover and and get balanced out.. or as balanced out as you can get with all you got going on.. best of luck to you ernie dear.. and i do really hope that those paralysis and fainting episodes decrease for you.. take care dear! hugs dizz

wow ernie.. you certainly have a horrid time with the hospitals near you dont you?? my god.... I cant say that i am surprised that they discharged you.. as...I ve dealt with some horrendously crappy medical treatment myself.(summer of 2005 i was discharged for the ER when my BP began to drop.. and i was starting to have a severe i do mean sever allergic reaction to meds.. I was not able to sit up let try to walk out of the Er.. yet they booted me out.. i had to find myown transportation.. which turned out to be a cab.. I had a delayed allergic reaction to a medication.. which turned out to be severe anaphelactic reaction.. i dont honestly know how i am still here today.. but i am.. devine intervention i suppose.. but i can feel for your situation ernie.. and i really hope that you get soem help and answers with this.. so sorry that you had to deal with that ernie.. i agree with waht maxine said.. you are a very brave person.. my goodness..and strong too.. you hang int here ernie.. and i hope that your medical care in the future will not be filled with such ignorance.. and blatant disregaurd for a human life.. BIg Hugs ernie

hello all.. i wanted to pop in real quick and say hey.. the past few days I took atrip out to Ohio.. cleveland where i saw Dr. Fouad... this was my 2nd time seeing dr. fouad.. and WOW! I was pleased with the visit.. dr. fouad was very patient with me and listened to my long list of concerns and answered my questions the best that she could.. I did have to have another tilt test done.. and SUPRISE!!!! I still have pots! .. no seriously.. Um she showed me my results of my tilt.. and while my heart ratea ctually behaved itself.. (i was surpirised..) But my BP still dropped systolically and dystoligcally..she said that my numbers should not be dropping that much.. she said a few points is normal.. but 10.. and 20 and more is not..but hey we all know that allready.. So anyways... she told me to be careful not to blame all of my "symptoms" on pots.. b/c it could be something else. She is having me come back on Nove 7th and she is going to have me have some autnomic testing done.. the blood vloume and some other stuff.. which is good...then i guess after she gets those results back we go from there.... then yesterday I saw dr.grubb and bev..and again they too where both great.. after seing grubb.. i (as wellas fouad) I felt like i am finally getting somewhere! my Bp's where wacky yesterday.. the first few times they took my BP they got no bottom number.. the nurse was like wow.. then they tried again and got something a bit more nomral for me.. this pots is nuts So i talked with dr.g about my parlayse and all that stuff.. and he diagnosed me with(used to be called familia paralyse syndrome) periodic paralyse.. and i am going to start treatment for that.. and i have to work things out here at home to get the sleep paralyse ball going..and hope get a formal diagnosis and tretment going for that.. i see my pcp on moday so i will adress the whole ball of wax then.. Um.. oh so he started me on a med.. and he knocked my clonidine back some.. b/c this new med..(diamox) will drop my pressure..more.. so i have to watch it.. he is starting me out on a low dose and i wil have to wrok my way up to 500-1000mg a day.. right now i'll be at 125 a day..he said that this will help level out my potassium levels... I also talked to him about my brain squeezing and pressure.. and he thinks that i am having edema.. swelling on my brain.. and that is what is causing my squeezing feeling and insane head pressure.. and its what is causing my eyes to bug out of my head and swell... kind of scary dont ya think? Um the med diamox.. used to be used as a dieretic.. now is used for periodic aparalyse.. but we will be kind of knocking 2 birds with one stone.. he said it will make me have to urinate more.. so hopefully it will flush out the excess... Um i kind of feel like i'm between a rock and a hard place.. in regaurds to IV fluids.. reason being b/c.. the IV fluids really helps my pots related symptoms.. But it is one of the triggers for the brain squeezing... i asked dr.grubb if i could do fluids more often and he was like i dont think so...!!!!!!! (yea i wass tupid enough to ask for more fluids! lol) But geting back to waht i was saying i feeel like im between a rock and a hard place.. b/c my body needs the fluid.. b/c i'm staying constantly at a level of dehydration... and it does help my pots.. BUT.. that brain squeezing OMG it is horrible.. I feel validated after seeing dr. grubb... I now know why i have such intense pain and pressure in my brain.. and that it is not all in my "HEAD".. like that Er doc told me back in may when this first started!.. an ER doc at MUO mind you.. grrrrrrrr... Kind of scary though.. i mean i am getting answers.. finally .. and treatment finally.. but wow... now i'd like to know why all of a sudden Im getting edema on in my head around my brain... I guess those answers will come in the next month or so after i go to Long island.. dr. g told me that some of the symptoms that i was describing sound like "Mountain Syndrome" any one ever heard of that? he said it is something that people who live or are in high altattudessuffer from.. but i am not in high altatudes i live on lake erie!.. what else?? Oh yeah I am going to start water theraphy again... Bev recommended this.. as nothing med wise helps with my pain.. so im going to do water therapy again.. to help keep things moving.. she said it will help with the pain.. and the arthritus.. and over all will help.. which i agree.. and am willing to try again.. I'm going to try knee high compression hose.. and see if i can handle those verses the thigh high or waist high ones.. due to boine leg pain.. i can normally handle compression hose.. i;ll try though.. I forgot quite a few thing i wanted to talk with dr. grubb about.. but i figure I got some other very important thing done there.. and the visit was great.. and i finally felt some hope.. along with validation.. and as ense of OMG!! someone is finally not blowing me off or passine the buck...even if i am a :complcated" chick!.. lol ...all my other meds are the same with the exception for my lower dose of clonidine.. bev wanted to put me on a seizure med for seizures.. but i was not to keen on that idea... It was kind of bitter sweet getting answers.. i feel relieved to get them.. and to be starting treatment.. yet at the same time it like holy COW!!! and i feel validated as well.. and so greatfull that i was not brushed off.. and not considered a crazy chica...but you all know how it goes.. the brain thing is going to interesting to figure out where it is coming from.. ill keep ya all updated on that.. speaking of crazy chica's.. i saw a psychologist while in toledo..(this was my idead by the way).. who works with chronically ill patients.. potsy people.. and im glad that i made the appointment.. the psychologist was very good.. and again validating.. and gave me some pointers.. whic i needed.... i'm going to se this psychol;ogist when i go see dr grubb.. as you all know ive been having a harder time deal with things latlely.. and coping has not been reall good on my end.. s i gave it a whirl.. what a difference a good psychologist makes!.. one who gets it! but anyhoo.. i was very greatful for the excellent care i got on this trip.. thought id share with you all

Jennifer.. I'm sorry that you are feeling the way that you are feeling.. and never feel bad about anything you want to post about.. vent away girlfriend!.. It doesnt not matter what degree of functioning you are at.. fact of the matter is you have pots....and it sreally bites... and it affects you the same way that it affect a person who isnt as fuinctional... Sending you big cyber hugs.. and hoping that you feel better soon..remember we are here to help eachother thru this.. if you need us we are here!! so vent away take care dizz

ME TOO LAUREN!!! I hope the doc will reconsider the ttt.. as i really really do not want any other one done..hopefully the blood volumn test will show what i need to get the procrit approved! that would be nice... its like the only thing that i have not tried yet..

yeah i have had a very hard time with my weight since my pots got very bad bvack in 2002.. then around the age of 17-18. (1999-2000).. i went from being very skinny to gaining a considerable amount of weight.. I lost it then gained it back and then some.. now in 2002.. since then ive gain ALOT of weight.. roughly 50 pounds.. some was medications.. and some was due to lack of excercise b/c i couldnt get off the couch of bed.. in 2002 i was put on florinef.. and it caused me to gain roughly 20-25 pounds.. and after i stopped the florinef.. i lost over 20 pounds.. I'm at low functioning right now.. but i do try and do alittle something everyday.. I have little 2 pound weights that i use for my arms and do exercises with..doesnt sound like much weight.. but for me it is!.. i also use a thigh master...( i get alot of laughs over this one.. and no i dont have buns of steel yet..lol).. BUT.. i use a thigh master to help the upper legs and booty.. I can use the weights and the thigh master laying down.. and a physical therapist showed me a few things i can do laying down as well or sitting to help gain.. and eventually maintain some muscles strength and endurance.. I also use an exercise ball.. whic i love!.. some days i just kick the ball back and forth against the wall if i am able to sit up.. and other days i bounce the ball... depending on arm strength.. and it fi am feeling really rambungist (SP>> OMG!).. i will sit on the ball and bounce... it helps with balance... But a few things trying to do it sbetter then not trying at all... these things have helped me I've lost nearly 20 pounds since doing t his.. hopefully more will eventually follow.. but also watching what i stuff in my mouth helps as well.. though some days i just have to have a cookie or 3..lol.. good luck dear and dont be to hard on your self about any weight gain.. pots is brutal enough...

Buffalo NY got slammed with a bad snow strom last week.. afew of my aunts and uncles where without power and heat.. 1/2 a million people in and around buffalo where with out heat and power.. as it stood on wednesday.. thousands where still without power.. they got at the airport 22 inches of snow.. some area's got more then that! It was NUTS!!!!!! snow is too early! to colld BRRRRRRRRRR.. not ready for it!

wow--hope that all is going well for you!! hugs

oh jan i am so very sorry for what you and jeff are going thru right now.. you both are in my prayers. and warm wishes.. and im sneding you some EXTRA BIG CYBER HUGS right now.. please do take care of yourself as well.. remember that you have your cyber family as well dear take care luv and hugs dizz morgan.. i too hope that you are doing ok and feeling better!! hugs!

Happy Birhtday Lauren!! SO very glad that you had a "good" b-day.. sorry im late on chimming!! you mentioned moveis.. so im gonna throw this one out at you.. have you seen the break up yet? or click? I saw them both and they arent bad.. click was pretty funny!(with adam sandler) funny guy... again happy b-day!! Big hugs a fellow dizz

HAppy Belated birthday dear emily!! so sorry that i couldnt respond before now!! Im glad that you had a nice birthday week!.. and had yummy cake !! MMMMMMM!! HUGS dizz

HAPPY BIRHTDAY!! sorry that i am way late!.. but happy belated birthday!!

that is fantastic !!!!!!! good job hubby!! on a great gift! Im so glad that youve got a lap top dear.. i should make emailing and what not abit easier to do!! happy surfing! luv and hugs dizz----OH YEAH! Happy anniversary! you never mentioned it!! 18 years is a long time!! very cool