dizzygirl

Oh persephone dear--hang in there my potsy friend!! I'm happy to see some spunk back in your postings... and there is no harm done in talking about how you truly feel.. we ahve all done it from time to time... and sometime no matter how hard it si to read or hear.. you need to be heard.. and ahve the chance to vent... and I'm sure more times then not we all have felt how you felt the other day.. i know i have! SO hang there dear!! and if need be I will join tea in digging to Oxford to "rescue" you!! love adn hugs dear linda

I get the feeling of electricity zipping thru me on a pretty regular basis.. and it really stinks.. the currents" or electricty buzzing in my head is aenough to drive a person mad!.. usually when I get the surges real bad.. I'm down and out.. I dont know what it is or what can make it stop.. as i havent found anything to make it stop yet.. but wish I knew something that would help... I can rember telling a doc once that i had electricty running thru my head.. and he told me I should go to the psych hospital!.. this was before pots was dx'd.. now i know it s apotsy thing i gueess I hope that it stops for you and is only a one time thing and that you feel better soon dear

I emailed bonnie.. and she said to do them sitting down ..my hr's are with in nrmal range .. not really changing too much.. despite the fact that my BP's are droping.. and I'm on the verge of passing out.. which is odd for me.. as my HR usually is up high.. not lately.. crazy body!!!!!!

good luck jacquie--let us know how it goes and how you are doing!! hopefully some good information will come out for you.. and they gain some more knowledg of pots! linda

hmm--wow ironic that this post was on when I logged on! I clicked other-- while I want to concieve a child... I was told that its to unsafe for me to carry a child.. and more recently I found out that the chances of me ever even getting pregnant are close to impossible.. (w/o some help in the line of fertility treatments) the way health and other factor stand right now.. and that has left me feeling devestated I would hope that in the future I could pursue fertility treatment.. if I stablize enough.. and get out of such a high risk zone... and my body behaves itself.. if not fertility treatments then I would look into adopting a child or children.. But for me personally I think that I would seriously have to stabilize ALOT and stay that way for a while before i would venture into adoption or something... as i can barely take care of my self at the moment.. let alone a child. How do you guys do it every day? those of you who have children? God bless you momma's out there doing this! If any one deserves a super mom hero badge it would be you ladies!!

thanks folks.. roselover--i understand what your saying!! thanks!! when I said moving around a little.. I met inbetween trying to get a reading.. you know just kinda of staying in the same spot but like rocking on your feet.. more then the ususal! roicking that is ..lol

thanks lauren for the tips.. I think I might contact bonnie... just to be sure.. as I dont want to get any delays you know in getting in there... darn potsy body! grrr.... dizz

Hi folks... I am trying to do a set of vitals for my vandy application... and I have tried using 2 different automatic BP machines... and I can get my laying down reading...that was 93/70 p.65 But once I have to stand for the 3 and 10 minutes reading neither machine will pick up a reading.. it read error over and over again... and I wont get a reading again until I sit down for a few minutes.. and I know tha in order to get accurate readings you have to do the standing thing....I was standing for the 3 minute reading and i felt so on the verge of passing out i could barely stand it.. my face and lips got all numb feeling and I started to feel like a rubberband.. you know the usual pasing out sucky stuff... I think I'm going to drop Bonnie an email and ask her about the unable to get a reading... despite adjusting the cuff... and even moving a bit.. nothing! I was thinking that maybe I can go into my cardio's office for a nurse visit... tll them why I need a set of vitals.. and have it done there..b/c they can do it manually.. and get an accurate reading... I actually think it would be better to do it that way.. b/c I know when I go in for my Iv's they try to do vitals and the automatic machine will keep beeping and pumping up.. and they never get a reading.. and end up having to do it manually... and even then they usually have a hard time getting a bottom number to register.... i think the only problem with going to the docs is geting there and trying to talk my potsy body into moving... amyone have suggestions on getting a reading while standing? with an automatic machine?? in the off chance that my body does not aloow me to leave the house for a nurse visit?? thanks dizz

Lauren you are too funny!!! LOL I hibernate" in the summer as well..(i also stay in in the winter as well--too cold!!) I only come out to play at night! and in the spring and fall..te he... last summer I was like totally house bound.... and I think that this summmer will be the same... we had a few really hot days this week and I ran the AC for like 2 days straight..my apartment building has ac built into the wall...its a dual heat/ac thing.. BUt I have to pay for AC use.. which is going tobe anight mare! I'm on the 9th floor of the buliding..top floor.. and heat rises! and my apartment is in direct sun light all the time.. IT gets HOT!! YUCKY!! I found one thing that help if you cant afford AC.. is I also have some of those fans that you stick in the window.. one side can suck or pull in air.. or both sides and pull out air or pull it in.. they do wonders to cool a small room down...as long as you have blinds or curtains or something to help block out the sun light during the day.. Slightly funny story-- last summer I couldnt get cool to save my life.. so I like lived in my bedroom.. my boyfriend put a AC unit in the window.. well I ran it at full blast the whole summer... and it got so cold in there that condensation formed on the cieling and walls! actual water droplets! it was so bad that we thought that the roof leaked... ..despite the fact that you probably could have kept penguins and eskimos very happy in the coldness of my bedroom.. I was still roasting my buns off! shoot call me crazygirl.. not dizzygirl! Hope that every one stay cools this summer....

just wanted to pop in and sa that I really hope that you find the root cause for your joint pain... I know that i have suffered from some mysterious bone/joint pain for about 12-14 yrs now.. been tested for RA and lupus and a million other things. they are clue-less what it is... DO you get swelling around your joints? and have you found your joint pain to be debilitating? meaning that its so bad that you can barely move? I ask b/c my knee keeps flaring up.. and whn it gets real bad.. I cant even bend or put pressure/weight down on it to walk... Someone suggested to me trying bengay.. I havent tried it yet.. but wanted to suggests it .. in the chance that maybe it will help you or take the edge off from the pain.. good luck dear hugs dizz

Lisa i just wanted to add my sorry about your denial for ssdi-- and I hope that your lawyer can help you in the appeals process to get benefits that are rightfully your!! hang in there dear hugs dizz

Hi jacquie For me I can generally judge the high and low BP sometimes based on facial color..(somwtimes not always) if my BP is low my face is generally pale and my skin is a funny unhealthy looking color.. if my BP is higher then norm.. or just plain old high.. my face-neck and ears get really really red.. i get flushed... but i also get flushed when I get tachycardia aswell... or if my bp is going crazy i can go from pale to flushed back to pale... freinds who know me well can generally gage how I'm doing by the color of my skin.. my friend beck can tell when I'm getting tachy or my BP is going up even before I notice it it b/c I start to red.. she noticed this way before I ever got dx'd but its not always a tell tail sign as i can flush with low Bp at times too if I'm over heated...

nina- hi.. yeah i know that pineal and pituitary cysts can be beningn and normal.. but i have a great deal of endocrin and hormonal abnormalities going on.. that is why i realy feel that what ever is going on there may be effecting things in a not so good way.. stellakitty-- thank you dear.. I have dr. heffez contact info and my just contact him as a consult via email or by phone to get some isight or oppinions from him...thank you though i have been on prendisopne for allergic reactions to sopme unknown stuff.. and it did make me feel better but prendisone cant not be used long term .... I checked into that allready w/dr. grubb.. as it really gave me a boost...

i was on verapamill a few years back.. and i think one other calcium channel blocker as welll.. Um verapamill made me extremely exhausted.. and actually mademe worse symptom wise...it was a very short live medication

hmmm--well yeah i would say tha sleeping alot is normal for us potsies.. i sleep a minimum of 10-14 hours a night.. I though do not have children or anything like that to take care of.. so I am able to do that... sleeping 10-14 hours at a time is during the night is about normal for me.. I do also need about 2 naps thru out the day...depending on the time i wake up... On the average I nap about 1-2 hours at a time.. so over all in a normal potsy day i sleep about 12-16 hours. If i am really really bad off with pots..(as a few members here can tell you) I have areally really hard time staying awake and wil sleep roughly 18 hours traight wake up to pee.. and fall back alseep.. and wake up whenever..and whne i'm bad of like that I'm generally only awake for maybe 2-4 hours on days like that.. and canbe like tha tfor several days.. i also go the othet way where I dont sleep at all.. this opast year i had horrible insomnia for nearly a year.. then i traveled to toldeo this opast march... and poor Julie couldnt get me to wake up!! I slept like alot.. the traveling really whipped me out... on very rare occasion I sleep about 8-9 hours and will wake up feeling great.. but that raely happens.. maybe once or twice a year.. so i think if you are tired.. and feel sleepy then sleep if you are able too..b/c you body probably needs it.. remember we use more energy then the average person to do simple task suck as standing.. so of course we are going to be more popped out then average joe!! Oh yeah...I usually feel even more tired after a nap too.. then before i dozed off.. i really dont get that.. but it always happens! you have a happy memorial day weekend too dear!.. dont worry about sleeping abit more.. your probably need some extra zzz's right now

HUGS!!!!!!!!!

yup i think so! sending the results and a boat load of other things to chiari...i hear they are very good..

HI all Yes even my potsy docs.. and many other docs keep saying that they are missing something.. but arent sure what that something is... I am applying to vanderbilt.. to see dr. robertson.. be it in his clinic.. or thru the research center... I really feel that I need to go somehwere where they can do some more indepth autonomic testing.. as well as other testing.. b/c something just isnt right.... and I know it.. i can feel it... I' also in the midst of gathering my records to send off to the Chiari institute...thye wanted me to send records and stuff then they will call me for an appointment.. I hope it isnt a long wait.. But yes I agrre that something is going on and I really hope and pray that they figure it out soon..b/c my drive to fight it is weakening.. the worse i get..I find myself talking to "the guy upstairs" asking him to find me some help or let me come "home" b/c this kind of suffering is beginning to be too much....

Hi folks! I got the results of my EEG that I had done about a week and a half ago.. It came back abnormal! Big surprise there.. the last 4 EEG's I've had done.. 3 of them in under a year.. every one of them have come back abnormal.. slowed brain functioning... this one showed the left side of my brain in the left temporal head region...it says that it is indicating a focal cerebral neuronal function disturbance... which is non specific.... that they feel could have been caused by trauma to my head or is early signs of a neurodegenerative disorder... My neuro said that they cant rule out seizures b/c my eeg is abnormal... so she wants me to start a anti-seizure med... Tegertol... and for some reason I think Iv;ve been on this before.. but cant quite remeber... I'm nervous to take an anti seizure med.. if i'm not having true seizures.. there was no "clear" epileptic activty on the eeg... Kind of ironic that an MRI last summer showed something on my pituitary gland and pineal gland.... and then the most recent eeg showed abnormalities effecting the left side of my brain... i cant help but think that those "things" are reeking havoc on my system.. even if some medical professionals disagree... all I know is even when I got really bad off with pots in 2002.. it was bad and devastating... but it was a cake walk compared to what I'm going thru on a daily basis now.... amazing. who knew that some many things can go nutty in your body at the sam time... I'm also suppose to start migranal nose spray stuff.. for my migraines.. to see if it helps... I do know that the squeezing has returned in my head.. and it isnt a migraine....oh what a fun day this is going to be... allrighty well the room is starting to look a wee bit cloudy..gotta love visual disturbances! dizzygirl me need sleep!

are you ok now? did you make it home safely driving while feeling like that?? so sorry that you are feeling like poo. feel better soon dear linda

YEAH!! that is great lauren!!! Have fun and lets us know how it goes when you get back!! Hugs linda

yyes I too hope that Ling pops in here and lets us know how she and her bundle of joy are doing!!

hi folks thank you! I'm pretty certain that Its not a migrain of sorts going on.. i dont know how to describe it. other then it fels different... then event my normal pressure due to pots in my head.. and stuff... the only other time i remember the pressure and pain being so bad in my head was in 2002.. I had been carted off to a larger city hospital in Buffalo NY... and my BP skyrocketted.. and my hr did too.. they never found the cause of it then either.. they ran like 4-5 bags of fluid thru me and gave me O2.. the oxygen helpped alittle bit with the visual things.. but nothing else helped much I rode it out.. ot\r tried to.. I remember it last for weeks.. and was pretty bad.. the blood vessels in myright eye had began to burst... that was not cool.. and it disappated on its own... so I'm hoping that it levels off soon b/c they pressure in my head and eyes is driving me mad... I'm sure my neighbors thing I'm looney b/c my apartment is so quiet and dark during the day.. cant get down with all the light and noise!.. jeeze i dont a freaky migrain wouldnt surpirse me at this point. going to neuro doc this week.. maybe she knows what is making my brain feel like its being squeezed???? i saw my pcp today.. she said that there is fluid behind my ears drums again.. big surprise there huh.. (there is always fluid behind my ears drums!) she put me on antibiotics for a longer course in the event that ear infection are brewing in my ears.. again!.. she just had me on antibiotics last month for an infection.. But I'm going to get e-xrays done tomorrow of my cervical spine.. and of my sinuses as well... woulod like to have an MRI done hat would be ideal.. but i have sucky cruddy insurance.. and they dont like to cover anything!! GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR! Ernie my dear I feel for you.. I hate feeling this way.. and really hope that it gets figured out soon.. b/c I feel like my body is just shutting down... its a terrible feeling!!!

hmmm.. boy do i understand what you are saying! I have hose.. but very raely can i tolerate wearing them.. i have some freaky pain in my legs like daily now. and I cant handle the compression... that and they make me terrible symptomactic..(weird I know) but i get so very over heated.. and have passed out a few times while wearing them.. and I';ve tried a few different styles and compression types... good luck to you

wow lauren that is fantastic! congrats!!!!!!!!!!!!!! I understand you feeling about this.. its got to be ahrd decision to make.. how far away is it? would you boyfriend by chance be ab;e to go with you?? and drive.. so that you could like lay down in the back seat?? If you would fly.. could you majorly load up on the IV fluids to help you get thru the flight? and hopefully get thru some of the confrenece? I think its good to be realistic about your OI... and how abig trip like this could afect you.. but yet.. on the other hand.. you could feel good during the trip and maybe not crash to badly.. and really be able to enjouy yourslef and finaly get to do something that you realy want to do.. and meet some awesome people in the process.... But please know that I am so very proud of you!! and am happy for you and this oppertunity.. and I hope tht you are able to find a way to do this.. I think it would be good for you.. mentally and spirtually.. and all that jazz... Just wanted you to know that I understand what your saying... and I so totally get it! But where there is a will dear there is a way!! hang in there.. and keep shooting for the stars and your dream wil come true in there own time... only when they are meant to happen ....fllow your heart and ambition.. you my dear have talent.. love and hugs dear linda