dizzygirl

hey that is fantastic news!! i'm very happy for you!! HOORAY!!

i have never been tested for blood pooling of the abdomen.. but would like too.. I'd be interested to hear what folks have to say also!

girl waht are we going to do about you!! LOL .. i get waht you are describing.. though not the esphagus thing.. at least not waht you are describing... ditto on waht ernie said too.. my nose feels like you describe.. like it is going tostart bleeding at any moment and it burns like.. burns burns.. have you started any new meds lately? could it be the nitro paste or something? are you still using that?? I dont know waht side efects those have ..)other then the headaches).. um.. when all esle fails call dr.g or bev I guess.. Iknow what you are feeling really bites.. I wish there were something that I could do to help you!! so here is a HUGE HUG for you!! can ya feel it!! hmmm?? you know how to reach me.. hang in there dear!! hugs linda

yeah being ot of meds isnt good.. that might eb contributing to things.. good i'm so sorry aboutnyour appointment yesterday.. big bunch of jerks! waht si wrong with people.. I jsut done understadn people and how they can do things like this to people and get away with it.. its messed up dear.. i'm so sorry wish i could do something to help!!

extra sanity!! once you leave your gonna need it! LOL.. trying to be funny!! um I would take any medical records with you.. COPIES of them not the originals... keep the originals for yourself!.. and just answer the questions honestly.. and dont take no BS from these people.. can you take somebody with you?? good luck dear.. I hope tht all goes well goes well for you.. let us know ok? dizz

sweet jesus!! that is just horrible.. how do peole slep at night doing these things!!?? I dont understand it !! its obserd!! make me mad can you see the smoke rushing out of my ears?? OY. my goodness! what si the world coming too!!

I get this ALL the time.. I know exactly what you are talking about.. I get it the worst during an adreanline surge.. and before during and after syncope.. do you have hyperadrengic pots by chance?? I'm working with dr.g to figure out the cause of it or the root of the electricty surging..I get major electricty zipping thru me...very often I et the feling bad in my head from time to time.. from one ear to the next it feels and sounds like what elctricty would feel and sound like.. kinda of like what it sounds like when lighting hits an electical wwire or pole or something.. in 2002 I was severe symptomactic.. and I had not yet been dx.. and the doctors where still running on the assumption that I was a real head case!.. well i can remember telling the onl call dcotr about this.. and he told me to go to the psych department of the ER!! he thought i was cracking up.. i was like s**** you! i'm not crazy!.. But yeah I do know how you feel.. I get it in my enitre body now.. it used to be just my head... its messed up feeling.. do you notice your heart rate speeding up when this happens? and do you get some viviid colors going in like an aora kind visula thing.. or exploding lights?? am I sounding fruity yet?? LOL just kidding.. but thesea re some of the things that I feel when this happens.. do you have a pots doc that you can call on or talk to about this? I'm sorry but I unfortunatly dont have any words of wisdom to make it stop... hang in there!! and dont elctricute anybody!! Just kidding!! unless it a rude mean dcotor or nurse then zap them with your "JUICE"!! LOL

Julie hi dear.. my my.. gotta hate the ssdi process! I filed for ssdi in 2002 ( wind you I was on ssi for the same kind of problems my whole life until I was 18 and they cut me off saying that i was no longer disabled! hello!!--welll long story short I said screw the ssi crud and worked full time.. I luckily had a fantastic employer/supervisiors.. and when I was out sick they really worked with me.. which was alot ).. point being I worked for a while.. and then could not longer work.. and had to re-apply for ssi +ssdi.. and I was denied the first time.. which is normal in most cases.. i understand.. well they kept screwing up.. and I had a legal adie attorney..( ) big help that was! I gather alot of my records and hadn delivered them to my appeal hearing (somnething the attorney should have done) but with all the screw ups.. things were delayed longer.. But yes thingsa re backlogged w/ socoail security hearing for appeals.. i waited over 2 yrs for my hearing.. i would strongly advise that you contact a lawyer who is KNOWLEGEABLE in SSI SSDI matters and will give it they all to help you.. and WILL SHOW UP TO YOUR APPEAL HEARING WITH YOU!! my attorney after all was said and done never showed up for my appeal hearing.. never called or anyhting to tell me he wouldnt be there.. and never informed me of my hearing date either.. I found out only b/c I kept bugging SSI for an appeal hearing date..in the end I had totravel back to NY for my hearing (that is where I applied at the time.. Iw as living there).. and they wanted me to reschedule my hearing once I got there b/c my lawyer wasnt there.. and nobdoy had heard from him.. (the judge's assitant even called his oofice).. so I asked them how long I would have to wait for an other hearing.. and she said about 5-6 months or longer.. I was like no way.. I cant wait another 5-6 months or longer.. so I did the hearing on my own..and I was awarded full SSDI benefits.. ans was armed with documantation from Dr. Grubb and other docs. the jusdge told me I would hear with in 60-90 days of the hearing.. I heard back with in less then 2 weeks of the hearing date..!! what happy day that was.. I was stunned at first then cried my eyes out!! So Julie.. it migh very well be a long process.. but you have medical documantation of your dx's.. make sure that you keep a record of all correspondances with these people!! it simportant! and go armed with info.. and agood lawyer.. preferrably one who sint going to take half of your back payemnts..but is still good! hang int here Julie.. and let me know if there is anyhting that i can do to help ok? BIG HUGS Linda how long ago did you file for disaility?

exactly!! I'm so happy to have the oppertunity to wear this monitor (not that I like wearing the things.. just it would be nice for somebody to see what i'm doing during a spell.. be it whatever type I might be having!) i have several wacky different types of speels. the worst ones being the paralysis with fainting while allready laying down..(baffling to me) I would love to wear a thing that would monitor my Bp at all times too.. geesh that with this heart monitor would be wonderful! really give them a eye opener. would probably scare the hebbie jeebies out of folks too!.. i know I watched a look of worry come across the nurses face the other day.. but yah the paralysis bites.. and so does the epsiodes where my heart feels like it not beating.. UGH!! makes me feel so yucky.. half dead actually.. yuck but I will let you know how it goes with this gadget... Nicole.. Ok so I can take the monitor and the base with me when i leave the house?yes no? the moniotor downloads when you put it in the base?.. the nurse told me to wear it on a belt around my waist.. hmm.. cant wait to talk to these folks.. I dont know it they are going to come to my house.. the place is based out of pittsburgh which is about a 3 1/2-4 hours drive depending weather and traffic..(i used to travel there pretty regualr by bus and its such a LONG bus ride 4 + hours UGH!! and if your real potsy OMG it horrible!! last time I traveld there I was so sick w/ pots that loooking back I dont know how I managed it!) so yeah i wonder if they will do that.. drive all the way up here.. I look forward to seeing this thing.. hopefully it will be her soon! and yes it will be a great comfort to have available.. reassuring..

carolyn--yes the app. was w/hayes.. she is pretty good! thanks for giving me her name!! ---last time I wore a monitor for exstented time period.. the skin was so bad.. I think it will be that way regardless of what patches I use.. dr.g thinks that I'm having laytex allergies.. so we'll see.. blnodie--I'm ready for the beeping!! i hope that al the nosie will be worh it!!.. if I leave the house will it go nuts?? or do I have to carry that base thingy with me?? stupid question i know!! but I havent heard from the monitor place yet.. and am wondering how tht works...

i would have to venture that its comon to wake up feeling sick..nasuea really is horrible.. i hate it.. i get the that feeling any time day or night..my boyfriend calls it my bed spins.. (i get horrible dizzy somwtimes when I am like that).. to the point as you said If i move or the bed moves.. I'm toast!.. i use levsin for the tummy pain/diarrhea.. doesnt help well for nausea though.. but if you are hvining GI things it might help.. havent found one good thing for the nausea yet though.. sorry!! feel better soon dear!

hmm.. my thought was hyperadrengic pots..Isuggests this b/c of the racing mind.. its just a thought)b/c Um I have my worst adrenaline surges at about between 3-5am.. same with syncope spells.. they are worst between 3-5 regardless of weather it is daytime or night time.. weird I know..but that is why I am up at 3-5 am most nights.. I am surging and sicker then a green monster!! YUCK! I hope that you feel better soon and get som much needed sleep soon as well!

yeppers.. i get tachy sit laying standing.. sleeping or not sleeping.. the tachy loves to wake me up from my sleep! or when I roll over.. i have found that I genrally have to take an 1/2-to one whole extra betaxolol (cleared by doc to do this) around 4 am to get relief..(on top of my regular 30 mg a day and .2 mg of clonidine before bed.. GRRR..) my tachy can go from 45 to 144 just like that with out moving.. apparently breathing is too much exzersion!! its a potsy thing for me.. always good though to talk to your doc if it becomes worse or your concerned just to safe!! hang in there!

blondie-- yeah they told me to wear it as close to the leads? as I can b/c if i dont and get to far away from the thingy you wear tht it will beep at me.. i then asked if it will beep when my heart goes nuts-so.. they said no.. (WHEWW!). and yes it is comforting to know tht ppl will be 'watching my ticker" and if I'm like having a screwed up epsiode I hope that it will show something that gives them a clue as to what is going on with me!! SOphia--I've got some bendryl dye free capsule here at home.. i keep stocked up on benadryl in this house ( --i blame it on the pots..lol)..iactually did not know until recently that there was a liquid form of benadyl.. does it work quicker then the capsules?? most likely more easy to swallow.. hmm thats is a MAJOR plus in my book!! Um i'm kinda wondering about the whole reaction to the leads.. as the last time I wear an monitor for an exstended period of time (event monitor) I was suppose to wear it for 1 month.. and ended up only being able to wear it for 2 weeks.. as I had some pretty high rates and my doc had seen enough..(he admitted me to the hospital for 6 days.. what trip that was!).. and also my skin welted up so badly it was unreal.. they could not believe the reaction i had to the leads.. so I made sure to mention that i'm sensitve to the sticky things.. they said to get hypoallergenic ones.. I'm thinking maybe pedicatric ones maybe if they have them available.. as far as i know they want me to keep going with normal activity the doc gave me no restrictions.. i think that they want to correlate a trigger (what ever that trigger may be).. w/ symptoms and go about a normal day.. technology amazes me too.. my brother shows me the high tech "toys' elctronics that he buys.. and I'm like HUH?? what wrong with the old way of doing things!! i get way confused with some things!! LOL. though the last 24 hours monitor i wore in october.. it was a digital one.. was pretty darn cool..

nope its not invasive.. you just change the sticky things everyday.. it suppose to be a "smart" monitor..i too hope that it provides some good info to help me..!! i'll willing to do anyhting at this point to get better... the brochure they gave me to look at.. its ratehr high tech looking compared to other monitors that I have wore in the past.. they are going to send me hypo allergenic leads..(though a doc told me recently even though they are suppose to be hypoallergenic there not!!..what a comforting thought! bet you cant guess who told me that! LOL

girl!!!--LuLu.. I would fight them on the whole wanting to boot you out of nursing school.. I think you should contact the ADA link nina posted.. and get some accomodation lined up in the event that you need them.. so that you have them.. if your docs are willing to alow you to continue schooling (especially dr.g) and you can manage if then go for it.. thats my opinion.. I know the desire and drive involved in the career.. I want so badly to go thru nursing school.. had I not got sick I would be there!! one of these days I will!a nd will look back and wonder how on earth I did that.. as I am sure you will when all is said and done for me personally.. especially listen to dr.g opinion on school/working.. he is honest with you.. but again supportive of you as well.. he told me flat out that I can not work.. and doesnt see if happening in the near futhur.. but was supportive to my going to school on a part time basis.. iF I could physically handle it...this was allmost 3 yrs ago) in 2002 about 5 months after I had to stop working.. I decided to go to school part time (before I was dx) and the school kicked me out after 2 weeks b/c of my illness.. they told me that i was too sick to attend school.. and I'd did not know of the ADA thing.. so fight it Lulu dont take no crudd!! you've worked hard.. my best advice is listent o your doctors who KNOW you anda re supportive.. and really listen to your body.. is it possible to cut your load down? and still graduate? go at a slower pace.. I know its nursing school.. and you might not have that option on that front but i thought that i would bring it up.. hang in ther LulU!!

YEAH!! WAHOO!! Julie I am so VERY GLAD that you found a "whipper snapper" (LOL ).. who is kind and knowledgable!! I am really glad about that.. about the colonsocope thing.. I am scheduled to have one done next tuesday..and I too ma nervous about the prep/as well as the test.. just due to the fact that liquid isnt exactly my friend theseddays.. But the docsa re aware fo my conerns and are taking extra percautions.. extra IV fluid.. careful moniotring of my Hr and BP.. and the BP like to bottom out on heavy pain meds and HR goes high).. but on that front..they agree'd to use half the standard dose of meds on.. and have double checked that the meds are NOT in family of drugs that I allergic too.. i seem to handle demerol allright.. so they are going to use that.. and another drug along with it.. only in hafl the dose... so talk to the about meds.. make sure that they know our concerns as well as pots and BP issues.. so that they can be prepared for that "just incase " scenario.. and ask that they pump you full of fluids during/after the test!!.. Oh and have the test done at the hospital.. and not a a surgery center too.. better equiped to ahdnle what ever.. and of course talking to grubb is good too! But great news on the doc dear!! I'm happy for you!! BIG HUGS!! LInda

Hi i was wondering. I am going to be hooked up to a cardionet heart monitor here this week.. my cardio said that its a really nice/good monitor to wear.. that it will record 24 hours straight.. and then its downloadable everyday..( not sure how i do that yet.. though).. and that they will be ale to monitor my heart thru the docs office on a monitor and at the cardio place in Pittsburgh.. I think that that is really cool.. and reasuring too(I at point thru the day feel like I'm checking out.. and my pulse is unfindable..) they said that it they or the docs office see's my heart getting to high or iratic or too low that they will call me.. I' was thinking to my self shoot they are going to be calling me alot.. But apparetnly this monitor if i recall correctly I was kinda loppy yesterday morning.. is a newer monitor??.. and it can record for a long eriod of time.. we are shooting for about 30 days.. to try and capture my syncope spells.. and see if they cant see what my heart is doing when I pass out and have paralysis episodes.. the doc said that if my heart rate is dropping to low that it can cause some of the problems that i am having in regards to bladder/bowel stuff.. the doc also talked w/ me about a possabilty of a pace maker..depending on what the monitor shows.. that if my heart rate is dropping.. even if it is only like a few seconds that it can casue me to passout..(i though NCS).. and that some of my syncope spells might be related to that.. and that pacemaker wont help my tachy and what not.. but if i got a pacer that i might feel abit better... but that they are careful w/ placing pacemakers in people who are so young.. I am confident that this cardio is not going to be all gungo -ho and be like Oh I can "fix"you..(when truthfull I dont think anybody can or has the power to do that) but is being truth full and honest.. and willing to look at all options available.. makes me feel better about things in general.. so I think I may have found a cardio to work with me locally and work with dr.grubb too.. whci is great!! so wanted to share my news and ask about this monitor.. it has a screen on it.. that if i am having symptoms.. that i touch the screen.. and it will plug that into the monitor too.. soo that is cool.. I ampraying that my syncope doesnt take a vacation during this time.. ( that sounds bad.. not that i want to passout ..) but I want them to catch an epsiode and see what I doing before during and after this stuff happens... I feel abit of hope finally in over a month!! a hopefull(but realistic)dizzygirl

oh yeah its loads of fun!! NOT!! LOL well I am feeling much better today then yesterday.. YIPPEE!! I'm potsy but at a normal potsy kinda of day.. I actually got to leave the house today!! and bought a new book to read (the purpose driven life) and grabbed a late linch at subway (yummy)!! and i could eat it without getting an immediate tummy ach.. HOORAY!! and I rented a movie to watch for tonight..Bu the best news of all is I slept a solid and I do mean SOLID 13 1/2 hrs straight with out waking up not one time!! I was amazed to fall asleep last night and wake up at about 1:30 pm this afternoon!! WHOOO! wow what a diference sleep makes.. I ddint even wake up nauseated this afternoon.. what a switch!! My Bp.. I dont know about that.. its nuts...I guess its just all part of the potsy package..i have had my bottom number flatline more then once.. and the lowest my top number has been recorder at is 45.. and I was barely conscious at that point...I as well as Dr.g are curious to see what my Bp is when I totally pass out...i think that would be zilch! 0... i remerber calling my parents once about 2-3 yrs ago.. and I had checked my BP and it was 45 over something.. and my dad goes well that cant be right.. you'd be dead if it was that low!..it has been like that several times since then.. go figure.. amzing bodies we all live in.. Melissa --did you find a body transplant waiting list yeT??? LOL let me know when you do!!

I was treated for waht they thought was astma for quite some time (it actual was restrictive lung disease! big mistake there in dx's!!)... but Iwas on all sorts of inhalers..albuterol being the worst of them.. and them nebulizer treatments are a real blast as well.. those 2 things makes me SOO wired its unreal. they make my heart beat much faster.. and I refuse to use them anymore..for tis reason.. there is a new inhlaer out though that is suppose to not have the sideeffects of jitter andrapid heart trate.. Xopenex.. the ER doc told me that its a new inhaler.. and that i mightreact better to it.. (but i have not tried it yet--its still stuck to the frdige door!) i dread having a bad flare w/ breathing problems or when I get bronchitus (about 4 times a yr..) and have to get breathing treatment and use inhalers to help get ove r the hurdle.. UGH!! but yeah I've been on all the neds.. hope that you find something to help you

Em I really hope that you start feeling better soon!! take care dear! hugs linda

jacquie--hi I really hope that SSi comes thru for you.. and that you dont have to go thru the appeak process.. prayers are with you dear!

hmm the apst 4 EEG's i have had done all show that I have slowed brain functioning.. but nobody knows the casue or reason of it.. I have the eeg report but do not understand what theya re speaking of about spikes and stuff like that..

Hi folks I am wondering.. I had a bad passing out spell w/ paralysis this morning. after having adrenaline surges all night.. and absolutley no sleep.. and again I passed out and had paralysis while laying down. baffles me i really does.. well of course after a spell I cant help but not fall asleep.. I zonked out for about 1 hour or so.. and then had to get going to to go to a cardio app... well I was really burning the candle from both ends today.. and I went to the new cardio.. and it went well in regards to the doc herself.. very nice.. what a switch!! Coming to my point.. I was still MAJORLY sysmptomatic once I got to ther office. then took me back and did vitals.. and they kept checking my BP I said you got a messed up reading didnt you?? the nurse was like yeah.. I cant get a bottom number.. so he kept trying.. and ulitamately my Bp was 130/0.. several times.. then he tried again and he got a reading of 130/20.. so the NP comes in and she is like WOW.. and re-checks my BP and it was 130/90... do any of you experience BP that the bottom number bottoms out.. and you have a top number that is actually high for you norm top pressure?? I'm just wondering b/c its not the first time that my BP has been so low that it is unfindable.. I guess that I am a bit baffled by things..I'm sure that I was still reeling from passing out too.. oh what fun that was.. NOT!! considering that I had about 1 hours sleep in over a 24 hour period.. and that I feel horrid in general! any inout would be appreciated!

Janine--oh my you make me laugh!! I too go see a new EP in the morning and am ahving some of the oughts that you are having!! I hope that all goes well for you!! happy leg shaving.. what pain in the rear that is!!