dizzygirl

nose warmer Huh?? LOL that is funny!! I think alot of use would invest in one..if somebody ever invents one..it really wouldnt surpirise me if somebody does!! LOL here'sa crazy though.. but what about wrapping a scarf around your nose area?? like you would when you got out side?? considering that most of us breath fire.. we could warm our noses up that a way!! LOL hmm i'm not sure..I thought maybe a warm wash cloth "propped" up on your nose.. but .. Uh after thinking about it.. I'm not even sure I would LIKE that!! i cant stadn people breathing there hot breath in my face. let alone a warm washcloth on my nose!! Sounds like you are feeling abit better today!! that is very good! take care!! and if you ever do come up with a nose warmer idea i'd love to hear it!!.. I wear many many pairs of socks on my feet.. and if i got outside multiple layers of gloves.. but the nose.. hmmm HAHAHAHA I just had a funny thought.. if we all had noses like that funny looking character on seasame street... we would have no problem putting something on our noses!!

hey good idea Jan!! I have always wanted to learn how to play the piano.. ever since I was about 3-4 yrs old.. I love the sound of piano music.. LOVE IT!! LOL when I was like 4-5 yrs old I was convinced that I was going to grow up and be a piano teacher... maybe I can find somebody to give me lessons!! tha would be very cool!

hehehehe-- nope I havent frogetten!! thanks!! cant wait to see it! going to look on amazon tonight!! LOL too bad you ddint live closer! you could come watch it with me!! and we could laugh about how POTSY acting Tom Hanks is!! HUGS linda

Blondie i have found that IV's help me agreat deal depending on the amount that i get. and how sever my symptoms are.. a full bag will generally give me a few hours of relief from dizziness and lightheadedness.. you know the potsy feeling.. UM if i get more then one bag.. I am likely to have a few decent days in arow where I am realtively functional and can sit upright! it helps raise you BP aswell..fluid raises BP.. which makes Us feel better!! YEAH Um you can try talking to yur doc and if you PCP or cardio whoever.. understadnt he dynamics of pots. then hopefully you wont have aproblem getting them..maybe you can get something set up for an as needed basis?? I know ER's give you (us) lip about giving us IV"S..which is crazy... But i have found that Iv's are one of the very few things that help me feel better.. i typically need severe bags though to feel a difference everyone is different on what amount helps them.. hopefully you can get somebody (doctor) to help you with this.. from personal experience you "MAY" have ahrd time getting insurance company's to pay for IV if you arent "technically" on paper dehydrated. this si where a pots expert would come in handy.. they can write you something explaining why no matter how much yuo drink and drink it just wont do the trick..I know b/c we (my docs) are fighting with the insurance company to get it paid for! good luck to you Blondie!

yep.. I was on the clonidine (catapress tts-1-2-3)..i noticed a difference on it.. its one of the few meds that have offered me some relief from hyperadrengic pots.. and really helped things (symptoms).. Um if you are sensitive to adhesive (the sticky stuff on thepatch).. if may cause you r skin in the area to get irritated..i had some weird skin reactions to the patch.. the medication patch..casued a light blue ring around my skin where the patch.. so if you see that dont be alarmed.. that is a normal reaction so I'm told.. then the other patch (the overlay) taht goes over the medication patch.. no funny colors there.. Um before you put the patch on.. (i wore mine on my upper arm.. and just rotated arms every week).. make sure that the area of the skin is clean.. and dry.. make sure that there isnt any lotion or body oil. or stuff like that on the area that you wear the patch or it will not stick right.. and will fall off your arm before the week is out.. trust me i learned from experience!! you can put alittle bit of rubbing alcohol on a cotton ball or something and clean the area.. that works well.. I used the clonidine patches from 2003-2005..(verysensitive skin i have!) and now take the pill form of clonidine befreo i go to bed.. it really helps with hyperadrengic attacks.. (i tend to get them in the wee early hours of the morning..).. I really hope that you have success with the patch and that it helps you.. the nice thing about the patch is.. if you dont like how it makes you feel.. you can take it off and wash the residue off you skin.. Dr. G.. gave me the patch form.. he said that it works better then some pill form b/c it is directly absorbed into the skin.. I was like atfirst how is a patch going to help.. but it did!!

Oh yes i wanted to also mention for relief of the PMS period blues and misery. that if you are able to get IV fluids.. that thta makes noteable difference for me...

Hi jacquie.. thought that I would add my 2 cents here too.. you can get a headache from BP changes and Hr and such..from high and low pressures. I also thought that .. how is the positions of you head and you neck when you are laying down... (believe me! I am a pro when it comes to headaches is any position) what I mean is are you laying on more then one pillow? ( I know I have been famous in the past for sleeping with approximately 7-8 pillows under my head at one time.. stupid to do if you have neck issue!!.. i know that now anyways LOL... it made it easier for me to breath sleeping proped up) I too get headaches in any position.. especially standing or sitting up for more then about 10 minutes.. if I dont have something to lean my head/neck on.. or to support my neck.. Point being that if you lay on multiple pillows it can like put a kink or something in your neck.. and that can cause a headache..if you neck isnt properly supported.. if you are getting headaches laying down.. you could try using one pillow. or you can go to a rehab store or even walmart.. they make cervical pillows. that will support you neck..( I have found that memory foam U shaped pillows or Buckwheat hull U shaped pillows are the most comfortable..buckwheat hull pillows are alittle harder to find.. i got mine from a medical supply store) they also makes long roll pillows that support the neck..or if you dont have the loot to my pillows rolls and stuff. you can roll a towel up and put in under your neck.. also if you have been laying dwon for a while and you havent eaten.. tha can also be a cause for headaches.. atleast for me it is anyways... and yes i just want to voice my PLEASE do NOT lay dwon after taking Midodrine.. that will make you feel horrible!! if you really feel the urge to lay down sit in a recliner. and recline.. these are jus thought od mine that I am familiar with. they may or may not apply to you.. but thought I'd chime in.. Hope that you get headach relief soon!!

good god carmen!! I am so sorry that you had to deal with that dr.. who thought he was "all that" stupid stupid stupid!!! I hope that you and you daughter are feeling better now.. and dont evr have to go to the ER again. and deal with DR. WRATCHETT!! NIG HUGS to you!

UGH!! YES YES YES!!.. no fun at all

lauren.. I am so so glad that the Midrdrine is starting to help you!! That is fabulous news!! and getting to go out Lunch also is very COOL!! BIG HUGS to you!! Linda

Thank you POOHBEAR!! i just read thru the Hobbies post.. OOOOOHHHHHHHH!! I got excited!! so mayn wonderful idea's rolling thru my head!! and a bunch of sites to look thru.. tomorrow night when I have insomnia and cant sleep!! NIna I just ordered the free catalog from frremountain.com.. that looks liek fun!!.. mt best freind is realy into beads and making jewelry.. I havea bunch of stuff she has made me.. and I think thtat she will love this as well!! thank you all so much!!

jesus!! I am so very sorry that you had to deal wit such ignorance today.. I really hope that yb working with your PCP that you wil start tof ell better HUGS to you dear!

thank-you al fro the suggestions!

Hi folks.. I am curious.. for those of you who are house bound.. what do you do to escape boardum?? I mean.. you can only spend some much time staring at the tv before you just cant stand it any more.. and the computer gets just as bad too!! and I'm unable to do alot of crichetting or needle point for more then a few minutes at a time.. and reading is like.. no exsistant!! and I love to read.. but cant see straight or foucs long enough to fully comprehend what i'm looking at.. and the words like to jump all over the page.. and bounce up and down.. (pretty talented letters in these books I read!!) SO I guess i am looking for idea's of things to do.. that will keep my brain from turning to mush!! i feel like i am turning into a hermit.. and i need/want contact with society!! and the outside world.. and i'd like to look at four walls that arent in bad need of a new coat of paint!! I wasnt sure weather to post this in chit chat or here.. so I posted here..

my freind who lives near delaware.. she got well over a foot of snow.. and it was still snowing whenI heard from her this evening.. they are buried in snow! has is my freind in MA.. and family in NY.. weg ot snow herea t home earlier in the week.. over a foot. yuck but havent gotten any snow from the big nor'easter that blew thru.. hope that you see green grass very soon!!

I am housebound these days.. have been now for a while.. I pretty much only leave the house to go to the docotors office.. and if i'm being admitted to the hospital.. (then i feel like I am on vacation! a diferent set of 4 walls to stare at!) sorry bad joke! I feel for you and wish I had some words of encouragement.. only to hang on!!

jacquie---i have thought that I mmight have some weird kinda sleep problem.. but honestly dont know what itis.. I had a sleep study in 2004.. but I dont feel that it was acurate.. i wasnt symptomatic at the time i had the study done.. i think that if i had one now.. when i am having symptoms and crazy weird scary terrifiying and frightening things happen to me.. that maybe they'd see something interesting!!

Jacquie--I definatly think/feel that the pain in your legs is realted to POTS/blood pooling.. I get some nasty pain in the old leggers if I stadn on my feet to long. or walk a distance that is more then i can physcially handle (which these days sint much ) Um.. for me if I over do it on my feet.. it sets off a sever pain domino effect.. I would recommend compression hose as well.. if you can tolerate wearing them..I have a fw compression type.. and fouind that hwen I can tolerate wearing them that 30/49 waist high compression works best.. I cant really waer them much due to pain in my legs.. and the fact that they are very warm to wear and casue to to get really over heated... oh and this might sound kinda goofy.. but having a really good sneaker that suports your foot and that is comfortable also can help with some leg pain.. I realize that a really good pair of sneakers can get pricy.. but is well worth the investment if it brings you some relief..

Hi susan.. I have been on cymalta since the tail end of september.. i get/have gottne the same kinda reaction that you are speaking of.. um in the beginning I wanted to stop taking it b/c it made me feel so badly.. but once the cr*ppy feeling went away I ddi notice a diference.. it helps w/ the bone/leg pain i get to a small degree.. and it helps me sleep a tad bit better.. Like i said I have beeen on it since september.. I still get the reaction that you are speaking of..I started out on 30mg once a day.. and then we (Bev..from Dr grubb office) we knocked it down to 20 mg. and I tolerate that better.. Um I have found that you have a to eat a decent amount of food before you take the cymbalta.. atleast for me I do.. in orer to not gett the bad nausea and shakes/chills..it doesnt always help.. but most of the time does.. it is totally up to you about stopping the med.. its a matter of what you can handle..i know in the beginning I so wanted to stop taking it.. but ti does help if you can find the right dose for you.. and can adjust to the side effects.. hang in there susan.. and I hope that you feel better soon HUGS Linda

What happens next next?? You still wanna "OPEN A can OF WHOOP AZZ ON SOME NIT-WITTY DR.'S!!----that is if you can stand to do the whooping! I have had symptoms of pots for 24 yrs. and the past 4 yrs or so have been the worst.. the past 10 months the most absolute worst..i dont know what comes next.. only that i'm not sure that I want to know! I can totaly relate and feel for everything you have just said in your post.. and wish that I had something more to offer..but I have lots of cyber HUGS for you!! HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG!!!!

hi folks ernie.. thanks!! Jacquie--my CD player bought the farm last night.. no music for me!.. :( geez! Janine--yes..I am going to get a copy of that letter the Dr. G sne to my PCP.. so I can show it to "witchy" Er staff.. and other rude medical professional..(shouldnt be called medical personel! if you ask me!!).. this is probably going to sound stupid.. but what is a lactated ringer?...i probbaly know what you are speaking of. just cant htink well today..I hope that me and drippy (that is what I named my IV pump last month in the hospital..LOL b/c it is so clinical looking...I decided it needed a name.. and it needs to be decorated with some goofy eys.. and glitter and feather and sparkly things..maybe a little mini Boa.. needless to say it was like 2-3 am and the nurse was walking w/ me in the hallway.. and I was feeling better and being goofy.. ).. So I hope that me and drippy get hooked up SOON!!! Ok you all probably think I am a nut case now name the IV pump/bag/pole.. But get a good mental picture( you all know what they look like!! imagine them decorated!! LOL Oh lord i'm loosiing it.. blondie.. I'm sory that you had a bad week too. hope that you are feeling better tofay Melissa--thanks for he hugs!.. yes it truly is maddening.. probably why i am talking about decorateing things.. good god I am so tired.. I am still in quite abit of pain..awhole lots actually.. but on a good front I feel hungry!! first time I have felt hungry in like over a week.. so I'm thinking I have to take the hungry feeing and run with.. and pray that it doesnt make me sicker then a dog... ...as i really cant handle the tummy /gut pains this week..I am thuroughly exhausted. and my body is in a constant state of the shakes.. hugs to ya all

Hi.. I understand you guiilt about wanting to fit in and such... but if this chair is going to enable you to be able to do your job and maybe be alittle less symptomatic thru out the day.. then forget about you co-workers and there "looks"...give them some really precious looks back !!! LOL.. maybe send an inner office memo.. giving a breif explanation of dysautonomia.. and leave it at that.. if they still have isues then it is there issue not yours!

Janine.. I have not taken glucosomine (yet) but my PCP wants to try taking it daily and see if it helps with my pain.. I hope that it helps you.. le me know if it works.. I;m always nervous taking new drugs b/c og pots.. here is to less snap crackle and popping!

Hi... I am SO SO done with ignorant people I tell you!!.. I had another syncope w/ full body paralysis late this afternoon... and am trying to recover from it.. I really zonked out after it was all said and done.. same kinda thing that happend before..just as intesne.. and just as painful.. only it ddint last as long i dont think... but the pain afterwards it just horrid.. i called the oncall ppl that I am suppose to call when this happens... and they just cant understadn why I cant just drink fluid to hydrate my self.. (I'm thinking OMG! here we go again..) and that I am smart enough to know tht I have to drink more the 10 oz of water in aday.. to a point i can understand there reaction.. but they do not know me and they do not know the difficulties i have been and are having.. today was a very bad potsy day in general.. and I did try and force myself to eat and drink.. but the pain in my guts and the nausea and vomiting is full forced today.. and it sjust isnt possible...what I did drink and try to eat.. ended up coming back up..and casued such pain that i'm like Ok i'm done for now.. so in the end I am not getting an fluids that I need.. and I am MAD i hate having to deal with on call poeple who dont know a thing about me or dysautonomia.. and the rdueness is just unbelievable.. how can you work in the medical profession and be asuch a freakin Moron!! so short of going to the ER.. and dealing with frick and frack.. to "try" and get fluids.. i am going to have to wait untill monday at the soonest..If one more person tells me to drink.. when I cant.. and they dont understand me at all.. I am going to scream! my pain level is high right now that I coudl actually puke from the pain in my body.. (not the pots..) i have stinging/numb like feelings in my face. and in my shoulder.. and surges of that same feeling every where off and on.. i can not barely move my head to the left.... and my strength sint returning as quickly as i thought that it would....my body is weak.. the muscles esp. in my arms hurt and burn like holy He@%.. i feel like my muscles are on fire.. and there is still twitiching going on in my face and hands..my eye balls hurt! i feel like somebody punched me a few thousand times in each eye.. my entire eye (S) hurt. and behind the eye as well..the eye sockets bones hurt.. my head is pounding! and eeryhting just hurts so badly from head to toe.. and a certain idiot i know thought that it would be funny to toss all my pain meds in the trash...( ) so the strongest thing i have for my pain in tylenol-extra strength.. GRR.. and no on call doc is going to call in a stronger pain med after hours.. no matter what.. I am so angry.. and in so much pain (probably adding to the anger).. and i am going to stop now.. any one have pointers to get rid of the pain.. and maybe gain some useage of my neck again?? ssorry to be some gurmpy.. i'm just had enough today..

mary i am sorry that you are going thru/experienceing these paralysis epsiodes..i can relate...(i have been having paralysis fullbody epsiodes all week long.. they think its my pots casuing it.. but arent sure..) I hope that you feel better.. Big HUgs to you