dizzygirl

this heat really bites!!!!!!!!! I went to a family thing today.. and there is no ac.. and my mom said to me a little while later are you feeling a bit better?? she goes we could tell when you walked in that you were not feeling well b/c you where white as a sheet. and your lips where a funny color.. and now you have a bit of color back in your face and lips" I'm like I'm potsy..it was 95 here today and about 90 in the shade.. I pretty much stayed in side and chilled in the recliner drinking alot of ice water.. and my mom got me a wet towel and put some ice in it and i wrapped it around my neck.. seemed to help a wee bit.. i didnt pass out thank god! But my lord I'm thankful that I have AC here in my appartment.. I dont know how i survived all those summers without it! no wonder i never was upright in the summer.. about 4 years ago.. I ran like 7 fans running in my bedroom..i was SOOOOOO hot.. But it was a very very hot summer in 2002 thank god to the genuise who invented the air conditioner!!!!!! YEAH! i will be a hermit this summer as well.. the heat makes me feel sick and tired too

forgive me if I'm wrong here.. But I though mestinon WAS suppose to help boost up BP. while its not it primary function for the drug..but i cal recall being told that its a "smart" drug that raises BP.. but allows you to be able to lay down with it.. unlike proamatine.. you shouldnt/cant lay flat with it for 4 hoursa fter taking it. its part fo thereason i was put on mestinon so that i could lay down on it.. and to treat pots overall Mestinon is a miracle drug for some.. and not for others... i hope morgan that you find something that works well for you.. and that you begin to put some pounds on. Oh yes morgan I was in the store today buying a ballon! glucerna drinks where right next to the balloons .. well i looked at the carb and sugar intake (diabetics are suppose to be able to use this) but the sugar % is around 28 grams and the carb % was ibelieve 38 grams.. I think i read that you only consume under 50 grams of carbs a day? i wanted to mention it to you.. as i know that i mention glucerna.. without knowing the ball park of sugar and carbs.. i guess you probably could drink one a day.. but that wouldnt leave alot of other room for anything else.. they have chocolate flavored-organe cream.. and a few other flavors.. good luck dear

karen- there is hope... you have to hold on to your hope in order to make it thru everyday.. and want tog et out of med.. with out hope.. you cant fluirish... there are people who do not really improve and continue to get worse or stay the same.. but as has allready been said.. there are people who do improve to a point where they are fairly functional.. with some limitations or adjustments i should say to daily living.. and knowing the things to avoid! so please don give up hope.. you never know when you miht come across something that really helps you...(i should take my own advice!! lol )

i've got calls in and a few emails as well to some pots doctors... hopefully they will have some idea's for me! but yeah they've evaled me to an exstent endocrin wise.. I'm trying to keep a positive out look on things.. sometimes that is a struggle though..

oh yes most certainly god bless our troops!! i cant believe --well yes i can--that they sent him anyways.. my brother served in iraq for over a year.. he isnot potsy.. but it was hard on him in many ways... i cant even imagine a potay there god bless him and all the troops! So do you have to go to Iraq?? when wiil you know? you would think that they wouls want people there who arent at risk of passing out cold at a any given moment.. sweet jesus.. my brother said hat it gets to like 120-130 over there in the desert.. add that heat to the amount of gear and cammo's they wear.. not to mention it they have to wear the chemical suites and stuff.. my god..talk about hero's I thank god everyday that my brother came back alive...I hope that you freind comes home soon and can get some medical help and be taekn seriously about his pots.. do you have a pots specialist? who can help you on this one? take care and godbless linda

yeah i'm definatly going to check out netflix's... do they by chance have books on dvd there too?? No my counselor does not like to do over the phone sesssions.. she would rather do the face to face thing.. I go on days where i can mange an hour session and the trip there and back.. its only about 7 minutes away driving or by bus...that and it gets me out even if only for an hour an a half.. outings of any kinda are like few and far between.. though it si easier with my wheelchair.. i get out a "liitle" more now.. jacquie!! i got the joke it is very funny and cure.. i love the picture of the cat! I'm going to print it out and hang it on my frdge.. it cute! i decided that i'm going to get a kitty in the near futrue.. give me something cute and furry to play with and love and spoil to pieces!! (or a big moose like spencer!! big baby he is) and to keepme company.. with me nearly homebound self! my gramma thinks that i should get a dog.. but I though no b/c what if i cant get up on a given day and the dog need to pee or do its business.. and i cant get up to take him out.. i really would like a lab (bee like daisy!!) or agolden retriever.. or a german shepard or a miniture pincher!! mini pinchers are so incredibly energitic!! and spunky wow! but yeah i think its time for a pet of some sort...

nope not really.. its a mystery! crazy body...

wow i hope that you feel better soon dear! hugs

thanks dear!! i've been meaning to call.. you know how it goes.. i've been a bed (couch) bug this week! i'll be in touch soon..

wow melissa.. i'm not quite sure what to say.. while its good that they have figured things out...it comes with its own set of emotions that is for darn sure.. I know that you have got to be grieving for many reasons..if you need anyhting please do let me know!!! I can come by and visit you when I'm in toledo next month.. keep you company for a while.. I'll bring moveis and music to make you feel better if you want!! take care dear.. and let us know how you r when you can.. and remember to put yourself first deary!! big hugs linda

thanks jacquie.. i was just thinking the other day about digning up for netflicks.. I'm a movvie buff.. I do try to do things to 'distract myself from how crappy reality is.. but symptoms are raging full speed ahead.. virtually non-stop these days...and i really feel like I'm well going to meet the allmighty himself-- i dont mean to be blunt or negative.. but its how i feel.. I enjoy watching funny movies.. so i keep stocked up on comedy movies.. and i like to watch the flip that house show and cartooms of course!!.. I just read thru my post.. and i think i should probably edit some of it.. and stick a reminder on my computer to not post posts.. when i am upset.. (like iwas this afternoon) I'm so sorry for my depressing post.. geesh!!!!! My dad sent me an email tha really made me smile and laugh.. well 2 emails actually. one of a smiling kitty with yarn around its head.. tehe.. and then a pic of my stuffed dog that i have had since i was a little little girl.. that he gave me.. well old "blue" has been thru the ringer w/ me..and hospitalizations.. he even went thru a surgery or 2 with me as a kid.. they put him in a sterile bag and put him by my head so i wouldnt be scared when i woke up in recovery! oh and he ot a nam band as well.. and many moves too.. well I had to send him home w/ my mom last week b/c his leg was falling off again!.. well when his head was falling of a few yrs back my dad sewed his head back on with fishing line of allthings.. and then made him an ear (his ears have fallen off--lol)out of a red bandana (hhehehehe) and took the reat of the bandanna and sewed it to his head.. its just funny.. well today my dads ent me an email of blue after "surgery" this evening wearing his bandanna.. and now sunglasses!! hahaha! i cracked up laughing when i saw that... dad sewed his leg back on with heavier fishing line .. lol Oh yes.. I'm seeing a counselor.. have been for a while.. it helps me.. but tis hard to keep appointments.. she really works with me on this though.. we no longer schedule appointments in advance.. she calls me on a day that she has a cancellation in the later part of the afternoon.. which works out alot better then a regulrly scheduled thing.. but i havent been able to get there in several weeks b/c i keep having to go inf or IV fluids.. i also scheduled an appointment to see dr. davis in toledo for when i go out thre next month... b/c i am having a nincreasing time "dealing" and coping" with multiple illness reacking havoc on my body.. maybe he will have some pointers for me!

i typically do not pee alot during an infusion.. maybe once or twice.. nd most of the time its a trickle of sorts..

that is great baby boy I'm glad that you are doing well!!

ok found one for dogs.. its cute too http://www.boreme.com/boreme/funny-2005/talking-dogs-p1.php

here si something that i saw a few weeks ago and found it to be hillarious!! for all of those kitty cat lovers.. you'll truly appreciate this.. makes you "really" wonder waht goes on in there furry little heads doesnt it? and what they would say to us if they could talk as much as we do! my favorite is the 3rd cat. the grey and white one.. te-he.. too funny!! ok this link works!! YEAH! http://www.metacafe.com/watch/77460/talking-cats/

I got a call from my ebdocrin office just now. and they have been calling ma and asking me about different drugs to use.. and most of them I've not responded well too.. inregards to PCOS and diabetes... b/c of my pots! she said that there is nothing else available for me to try..so right now i have nothing to treat my pcos... and things are really nutty there.. and as far as the diabetes goes.. we have to further discuss that..b/c they cant use some drugs b/c I'm staying at a certain level of dehydration all the time now.. and we all know what dehydration does to use... as far as diabetes meds go.. my sugar is really only going up after or right before passing out or paralysising...or when i'm really sick with pots...other then that my sugar levels are in normal range...most of the time my endo was like when i saw her.. we cant put you on meds for like all the time use b/c you sugars in the morning s are running between 70-130. with ion normal range.. they where throwing the idea around of insulin shots...a low low dose of insulin for when my sugar spikes.. I'm really trying to fight the urge to start crying.. .. but i just feel defeated w/ my body and the fact taht things are going abslutely nuts!!!!!!!!!! my vitals are all over the place..i so want to have children down the road...i thought that if I was able to get all of the se medical things stable that maybe i could have children.. 10-15 yrs down the road.. be it my naturally or adoption or something a weeping dizzygirl ***edited by dizz--sorry for the sad depressing pots yesterday folks!

yup totally get the carbs and sugar deal my dear morgan!.. me and carbs ======bad bad bad!!! gesh! i wish that there where something that i could think of to help you.. maybe i will scour the internet and find something... hmmmm.. well here is something i can do!! sending you some BIG bear HUGS!! take it easy dear love and hugs linda

yup.. iget that way even if i dont pass out.. i get slurred speech.. and at time just can not talk.. despite the fact taht i want too.. or i more often them not.. have trouble forming words.. or my sentences tend to come out all mixed up... one time i wanted to say "i could never shovel snow at this point" and i said some thing like.. i never snuggles show".. was funny.. but yet not funny.. b/c i do that alot (no not snuggling snow ).. they dont know why i do it.. but I just kind of deal with it... and know that if I'm having trouble talking that I more times then not need to start pumping in the salty fluids.. or need to check my sugar... good luck to you.. seeing a neuro is always good.. especially if this is something new for you.. take care

oh my morgan! I'm so sorry!!!!!!!!! Um I wanted to mention about glucerna.. I've eaten the glucerna chocalte PB bars.. they actually arent bad.. I dont have a box here at home (i ate them all.. lol).. but i havent tried the glucerna drinks yet.. I'm diabetic and have to back off the carbs.. so its worth trying i wish i had something more to offer... I hate to say this.. as I'm sure that you are like a feeding tube>>??? my god. But maybe it wouldnt be such abad thing for a short time? do they know why morgan you are loosing so much weight?? have you ever been seen by a potsy specialist? can you PCP contact dr.grubb or dr. robertson somebody and consult with them or something?? oh but to my point of the feeding tube.. i know its got to like really stink.. but maybe it would be helpfull in that it will help you gain some weight back?? and maybe hopefully in the mean time.. your PCP can start calling vandy or grubb's office.. and work with them by phone.. I'm most certain that you cant do a trip there.. I know that grubb works with docs by phone.. he's worked with mine before.. taek care morgan dear love and hugs linda

Hi lauren.. my gyno and endocriniloigst told me recently that you dont necessarily need to have cycsts on your ovaries to have PCOS.. ( despite what some docs might think).. I do have one cyst on my one ovary.. but they dx'd me with if b/c my testosterone levels are high.. and I'm insulin resistant.. and b/c of the high levels of testosterone floating around in me for several years.. I've gotten "furrier" then I'd like..excess hair thing going on.. and just based on them looking at me.. they said i "fit" the body type for PCOS.. b/c all of my weight is in my middle mid section... my armsa and legs are still skinnny..! I used to be very skinny before my body started going nuts!! not no more.. holy cow!.. but uh. yeah have them runs some labs and specifically ask them to run check the testerone levels.. and other hormone levels.. and to run an AC1.. i think its called that will check your glucose (sugar) levels over all for the past 3 months or so.. and if that is elevated.. ask them for a glucose monitor so you can track you sugar levels and see if they are up down or just right.. but in a nut shell.. pcos is primarily dx'd any more strictly by if there are cysts on your ovaries.. but it is something that they check b/c it can be a key factor .. they look at labs and stuff now as well.. if it turns out that you have pcos.. there are treatment options available to help level things out.. good luck dear

i have experiecned what you are going thru... though not so much with the glue feeling.. I get more of a feeling of extreme heaviness.. and lung congestion.. when it gets really bad i can not even barely take short small breaths.. and i feel like the air is being sucked from my lungs by a very powerful vaccum.. I've found under no cercumstance can i sleep or lay flat b/c i get that feeling.. have you tried sleeping somewaht elevated? with your head elevated? I know that here we have this rehab store a few blocks from where i live.. they sell these triangle wedge pillows.. that you can lay on.. i like them to put under my head and legs at night or during a nap.. they sell different size wedge pillows... I read an article a few months back about dysautonomia.. and that there are a hadnfull of patients that expereicne the feeling of glue in there lungs.. and that it can be pots related.. I will see if i can find the article..(bee.. do you still by chance have it??) and PM it to you... I'm sorry that you are feeling this.. hopefully it will not be a regular occurance... take care

good luck lauren.. hope that all goes well for you and that you get some answers soon please do let us know what you find out

yup i called my doc..

hmm i've had 4 tilts done-- the intital one to "help" diagnose pots.. one at the cleveland clinic. that also confirmed pots.. one done in pittsburgh to see if i was hyperadrengic verse just potsy.. then one 6-8 months later to see how much we had to go up on BB's.. i "never" want to have to go thru another ttt again.. as they really do make you feel like poop....and i dont see the sence in going thru a 5th one b/c i already know i have pots... and a nutty HR and BP.. this ansar testing do they use it at the big research hospital like vandy or mayo or NIH?? do you know if any of the autonomic specialits use it? in regard to them keeping you janet on the TTT tilt you where flat lined.. that is stupidiy on part of the docs and nurse's i think.. b/c as dr.g put it in the the confrence vid's.."you are unconscious for as long as the doc leaves you upright" or some thing along those lines... they should NOT have left you upright till you flat lined just to see if they could get you to bottom out like that.. that is ust obserd and pure ignorance.. Never have any of my docs left me up "too see" what will happen..when my Bp's start hiting 60'/40's they lay me down... I'm sorry that you have had such a severe reaction to the ttt.. but the docs I've seen wouldnt do that!! Especiallly if they are trained in dysautonmia!

hi all I'm wondering do any of you ever just feel exhausted after getting Iv fluids?? I've noticed after the last few times I've gottne fluids that I'm straight up exhausted! and all i do is sleep.... also during my infusion today i started to get that squeezing in my brain again.. and broke out in a icky rash.. my skin is as red as a sunburn and have slight fever of all things.. and am achey..which is weird... I'm thinking that I'm having a reaction to something.. but am not sure what... nothing with latex was used on or anywheres near me.. and the fluid was ran 1 1/2 liters over about 12 hours... I headed off a nasty day of GI troubles that was brewing.. by popping levsin.. any one get pooped out after fluids? even though I was sleeping off and on all day.. having a ahrd time staying awake.. for the past few weeks I'm so incredibly tired i cant shake it.. and all i want to do is sleep sleep sleep!!! i wake up pop my am meds.. try to eat and do a few things.. then it back to bed.. for about 4-5 hours.. up 1-3 hrs. back to bed running real low on steam and energy these days!! any one get teh IV thing?