dizzygirl

Jacquie i am glad thqt your appointmenmt went well!! and if you need some good books to read.. I've got plenty of suggestion... (i'm a major book worm!!!!!!!!! love to read) i could email you alist and maybe your sister (???) would go to the library and pick a few up for you?? be a regular book or on disc! or tape funny i got asked the same question yesterday by my pcp.. and i told him I sleep.. LOL.. i was trying to be funny... he did chuckle... take care dear oh yeah.. do you by chance have a recliner that you can lounge in?? if you cant "lay" down on midodrine?

thanks folks.. i was just wondering if any body else is like this as well.. before i was diagnosed with pots in 2002.. they said i had hypertension a few years prior to he mess of 2001-2002... b/c my BP's where more high then low at that point... now its more low with some spiking and flatlining thrown in the mix..(gotta keep things interest i suppose.. NOT!!) I am on beta bloclers 2 of the actually... and i take them like clock work everyday.. my body lets me know if i'm late taking them it goes bonklers janetrn--yes i have a severe case of pots that is not and has not responded to any drug well other then my current BB"S.. and that is a low best at best...it keeps my ticker at bay in the typically the 80-120 range.. with lovely bouts of really high tachy 200+ rates .. and yes i am diabetic.. and no i dont sleep well either!!!!!i thanks folks dizz

yeah me too ernie!! scary thing is my BP had been realy high even with BB's!!! EEEEEEEEEEEEKKKKKKKKK!

hmm--i'm not sure of the answer.. as i was only on midodrine a short time

my god.. I am very sorry that you got the dreaded dneied letter in the mail... I'm sending you lots og hugs right now.... ( i know doesnt do much for the immediate problem.... but I SOOOOOO understand what you are going thru.. I was On SSI-- from shortly after birth until I was 18 yrs old.. and at 18- the big magic age.. they decided that I was now "WELL" enough to work.. mind you I had pots then too.. didnt know it though.. kept getting told that i was a looney bird and it was all in my head and stress... well long story short... the SSI office really p**sed me off.. so I said screw it I will go work.. despite the fact that I' was sick every other day with some odd ball thing... So I did that for 2 years.. often working 2-3 jobs at a time.... I worked a little bit when i was 16-17-18 ( i had too as I was liveing on my own since 15..) but at 20 I had to stop working all together.. and applied for SSDI this time.. I too got denied the first time.. aftre waiting about 5 months to hear something.. I too cried... and wondered waht i was going to do.. another long story short.. I some how made it my dear.. and i did get approved some 2 yrs later... i fought the appeal..with little help actually from a lawyer...i gathered what documantation that i could and took it with me to the hearing.. and i heard back in less then 2 weeks.. asying that i'd been awarded full benefits.. and ironically enough that i had worked/ put in enough to the "system" by working all those jobs for 2 years!!!!!!!!! to qualify for SSDI.. but i'm rambling...i just wanted you to know that I'm thinking...and i'm sorry about the denial leteer and i hope that your appeal goes quickly.. i dont know how they can say that we "you" can work after looking at waht we go thru!.my goodness.. its obserd!! How do these people sleep at night knowing what they are doing to folks.. ( the ssi people).. geeeeeezzzzzzzzzzzzzzzzzzzzzzz! hugs dizz

COOL!!!!!!!!!!!! thanks for the glipse of coming attractions!!... I SOOOOOOOOOOOOOOOOOOOOO LOOOOOOOOOOOOOVE the beautiful butterfly quilt!! BEAUTIFUL!! I crochetted a baby blanket. that I will finish up tomorrow and ship out on thrusday! cant wait to see what else arrives!! everything up so far looks beautiful!!! thanks for all the work you all are putting in "behind" the scenes (sp?? whew! cant think!)!! dizz

hey folks I'm wondering.. as I have been going thru my med records over the past 4 years..I'm noticing that there are some pretty big differences in my BP's (and HR's but that we allready know about) I'm wondering is it normal w/ pots to have really high BPs'?? meaning 190-200/ over 100-145? and then the next day literally have a BP of 45/23 or 90/54? to have such drastic changes? and such big spikes? I was wondering as I was reading if maybe my body is REALLY trying to OVER compensate to keep me conscious? But uh several BP reading of the top number being higher them 160 is a bit concerning.. and consistant bottoms number of 90-100 and higher... that makes me wonder too!! so do the BP reading of 130/0--150/0-- that is just odd.. but then i thought of a conversation (about my 200+hr's) i had with my potsy doc about 9 months back.. and I reconsidered my idea of over compensating.. anywhoo..the low BP's I understand... can you have both hypotension and hypertension w/ dysautonomia?? I'm just curious to see what you all think.. I'm not looking for a medical dx'.. I'm just bouncing thoughts of mine off your guys heads!! (i'm trying to bounce softly!!! lol ) and I'm trying to piece the the gigantic zig-saw puzzle together as well.. and would appreciate any thoughts or "opinions!" thanks a bunch dizz

yup i know what you mean.. it still freaks me out sometimes...its like my brain is jiggling around in my skull... dontknow what it really is waht casues it though

THANKS!!!!!!!! i really did enjoy my day today...!! :) :) L:) mom4cem---yes i probably will terrorize the roads!! and the sidewalks and walls!! my mom and aunt/brother where teasing me this afternoon.. they noticed the "paint scrappings" on my arms on the chair.. and asked what it was.. I told them paint.. they laughed .. i told them that when i get symptomatic that i cant steer the chair or see straight.. and as a result I have multiple colors of pains on my chair.. from my apartment/building and the hospital walls.. (i was very syncopal one afternoon and had to make my way to radiology.. well i brought part of radiology home with me!! hahahaha oh well.. no harm done...(except for the missing paint..LOL

hmm. i talked to my mom.. and she gets sick feeling to brushing her teeth!.. she has not been dx'd with pots.. but i'd bet money that my mom is a potsy girl too.. along with grammi and a few other women and possible men in my family.. i dont know chalk it up to another weirdness of dysautonomia.. how nutty

I just wanted to mention about metformin.. I was on t his last year before being dx'd with PCOS.. i was on it to treat diabetes.. and ahd to go off of it b/c it cause some really BAD diarrhea...METformin is a rough drug to be on GI wise.. BUT if you can get past the side-effects.. its a decent drug to treat/manage diabetes/insulin-resistance.... they recently wanted to put me back on it b/c it is the first line drug being used to treat PCOS/w/ diabetes/insuline resistance... my endo and i talked.. and decided that metofrmin is not in "my" best interest b/c I'm allready staying at a constant level of dehydration despite IV's and salt water loading)... I just wanted to throw this info out there.. as dehydration is not in our best interests! and if you do have diabetes/and or insuline resistant and have PCOS as well... be sure to drink more the water/fluids the usual so that you do not get dehydrated please!! I will more then likely be starting insulin shots to treat things along with some hormones and things.. also my testosterone levels started getting high back in 2002-2003.. and now they are higher then they where 4-5 years ago.. and i just now go the dx of pcos also I too have had symptoms of PCOS for about 9+ years.. and ddint get dx'd till a few weeks ago and I have seen 3-4 different endo's along with gyno's and various other docs.. so i agree finding "AGOOD" endocrinologist is the key.. also if you are luck enough to find one that will be tuned into you pots/dysautonomia as well is also good!

Hi folks I thought I'd share with you that I had a quarter of a functioning day today!! I'm potsy but not to the point of no return.. (meaning I can sit up right today! for a little bit) having tachycardia..abit mroe then usuaul.. but i think the ability to use my wheel;chair really headed off a crash!! BOy this thing can book if you turn it up to full speed.. i mean for a wheelchair that is! And it was a good day ontop of it the potsy stuff.. b/c my grammy and my aunt and 2 of my cousins where in town for the day..(they all live out of state) and my mom and brother where there too..(they also live quite a distance away)..my one cousin is going to be 13 this month or is it next month?? and she is total teenager!..I was like wow! I used t change to diapers and now you are 13~!!! she was like OMG!! you know teenage mortified.. too funny! But anywhoo.. I rode on the city bus in my wheelchair to the mall...and i was able to be there for about 2 hours... I had abit of trouble.. but was able to recline back and prop my feet up on a bench.. I actually on went into like 2 stores and spent a grand total of like 5 minutes all together in there! and the rest of the time everyone sat on benches chit chatting.. so that was nice.. i enjoyed my self and now I'm ready for a nap.. But just wanted to share good news with you for a change.. it seems i keep posting about the cruddy depressing stuff.. and thought well how about something happy!! Allrighty its time for anap!!!! ahappydizzy

lol.. well hey i dont know how else to word it w/o being super gross!! but thanks for the pointers folks.... hopefully one of them will things "along!"

hello folks me again! I'm wondering.. aside from the usuall issues involved in trying to stand to brush your teeeth.. do any of you find that it you stand and brush your teeth (even after you've stopped brushing).. that you get incredibly nauseated? even if you sit down to brush your teeth?? I've noticed that brushing my teeth seems to be a trigger for syncope or near syncope in the summer months.. I hope you all dont think that I'm nuts! but seriously.. yesterday.. I woke up not feeling well.. and i figured that the least i could do today was brush my hair and pull and pin it back and brush my teeth.. since I was feeling cruddy.. a shower was not an option.. anyways..I got as far as getting the tooth brush wet.. and brushing a little bit and i started to feel REALLY over heated.. (mind you its only roughlt 60-65 degree's out here the past fews days!).. I was thinking geez just let me brush my teeth.. and sat down to finish.. well I got the incredible urge to puke.. and really dizzy.. so I'm like ok enough tooth brushing... and grabbed 2 washcloths and stuck it under the cold water then layed the wet cloth across the back of my neck and held one on my face..... apparently not soon enough.. b/c I started puking violently.. and couldnt see straight.. and the room was seriously spinning.. and the floor felt like it was moving and going to disappear beneath my feet.. I came SOO close to passing out on my bathroom floor.. i couldnt get cooled down to save my life.. and the puking didnt want to stop. Do any of you get yellow ( i call them lighting bugs) things fly around your head before you pass out? I had an exsplosion of them.. and the black ring that forms around my eyes that shrinks.. a few years back during a hospital admission.. I got up to brush my teeth.. and was only standing less then a minute. and my heart rate shot up to 175.. the nurse was there in short order and i wasnt aloud to get up by myslef for the rest of the day! it amazes me how a simple thing such as brushing my teeth be it sitting or standing triggers such a potsy attack and syncope.. and it happens during the summer months like clock work! for the past 6-7 yrs.. it will go like this now thru september... and i cant not brush my teeth yuck!.. I've tried using just mouth wash sometimes till evening.. but it seems to be putting something in my mouth that triggers its.. not just brushing my teeth.. sounding werid yet??? YUP yesterday i crawled into the shower after the syncope stuff settled down a little bit and sat bottom of the shower and let the cool water run.. b/c i was so over heated. it was making me feel really sick... then aftr wards i slept allmost 5 hours.. any one else experience this or am I loosing my marbles? i dont understand how something so simple can casue such a rough time!!!!! its down right pathedic! lord i hate summer time ( the humiditiy and heat that is!!!.. but love that there isnt any snow on the ground!)

Hey folks.. I'm wondering how do you guys deal with constipation? I'm not able to take stool softners (sp??) and stuff like that.. But I'm so freakin' constipated that its like trying to pass a cement brick w/ thorns (sorry i dont mean to graphic.. but holy cow!!!!!!) and OUCH!!!!!!! I usually alternate between constipation and diarrhea.. I've only had one real bad bout of diarhea this week.. and that left me puking and sick.. UGH. So how do you regulate yourself w/o medications? any idea's other then prune juice or prunes? amiserabledizz

lauren.. i was just diagnosed with PCOS afew weeks ago.. I honestly do not know if there is a connection.. my only thought was its kinda confusing in regards to waht is causing irregular menses.. as pots alone can cause irregular periods.. and so can PCOS... I'm not sure.. would be interesting to find out though.. hugs linda

thanks lauren!! I too hope that they can get to the root of things sooner raher then later...I'm setting thing in place to go to long island to the chiari institute... i guess they have some state of the art testing there... I'm trying to come to terms with things and realize that even if theye ver do find out the cause for my pain and the root cause of my pots and other things.. that there may or may not be a "cure" or fix all.. but i am at least hoping for some answers... and maybe a bitbetter management of pain and pots too would be nice... I'm hoping that i get into vvandy. I' curious to seewaht they have to say.. like i said I'm keeping my expecttation low.. not in a negeative way.. but i'm trying to be realistic. and not get my hopes up to high and then be devastated later on ya know? But i too hope for answers and solutions... to atleast know!!

well the only driving I did was when i was taking one oon one driving lession w/ a driving instructor.. and i actually had to stop ddriving just before I went tot ake my road test b/c I'd get so dizzy driving.. that i didnt feel safe on the road.. and i while i ABSOLUTELY LOVED to drive such a feeling of independence! it made me very symptomatic b/c of the level of stimulation that you have while driving.. and the being alert... i couldnt do it..then i lost the use of moving my neck and arm.. no driving for me! and then my doc a few yrs later I wanted to reapply for my permit.. my doc will not allow me to drive... but i am passer outer.. so.. I choose in part to not drive.. and my doc wont let me... But yes i expereince what you felt all the time.. its scary at times.. but passes.. I hope that you feel better soon... is it possible for somebody to be with you when you drive? so they can take over if you get to symptomatic??? please be careful!!!

well.. when i was about 16-17 i would have severe panic attakcs..the last time i had a severe panic attakc was in 2002 the night my grandmother died.. and its a good thing i was allready in a hospital b/c i freaked bad.. But the difference for me.. is when i used to get anxiety attack they would accompanied by really intense over powering fear and straight up panic..and aggitation/irritability..and anti-anxiety drugs helped.. Now during this time (16-17) i had potsy attacks.. but they where different.. and drugs did not help them.. often sitting in a cool shower helped them...meaning that my whole reaction and thinking during these where way different.. i wouldnt be over come by fear and panic.. But i well felt potsy fast heart rate.. I'd be on a tare.. with huge amounts of adrenaline zipping thru me.. and I'd feel jitter inside.. and couldnt sit still during some them.. when I'd get like that i'd clean sometimes..and looking back on this.. i realize that i'd get like this during the prime hours of norepephinerine release 2-5 am.. like clock work...I now know that even them i was surging with way to much adrenaline.. Now my potsy attacks are much different in nature..all together.. no fear panic with these.. just feeling really bad.. in a nut shell for the most part i can diferentiate between an anxiety attack and a potsy attacks..over time i learned the difference... i got treatment for my "true" panic attacks.. worked with a good psychologist to weed out the boogie men in my closet for about 4 yrs. and learned some tricks to ground myself during an attack..i no longer get the severe attacks.. only once back in februaury i had a not so nice panic attack.. but ti was b/c I was expereincing new symptoms and started paralysisng left and right... and i've also learned coping skills for potsy attakcs.. some time it helps some time it doesnt.. hope i'm making sense..

hey thanks for the reminder dear!! I've got to ship out a package soon!!

Hi Joy.. welcome! sorry you have potsy.. but glad that you found us to help ya thruit and found an outlet to vent your frustrations! about your hubby.. could maybe you try talking to him.. explain that while you often feel sick and cruddy.. that symptoms opften vary from day to day.. heck they vary from minute to minute sometime too.. my point being.. that while yes there are limitation.. that you would like to hang on to whatever you can still do and make realistic adjustments to what you have trouble with doing on your own.. i understand you hubby's "over protective mode".. but some times our men can go WAY overboard or just flat our not care.. its hard to find that balance... but talking with him might be a start... good luck dear and no you arent whinning!! your are expressing how youfeel! you can do that here with no worries.. its a pretty caring and supportive group of folks here! so talk away! Hugs Linda

good luck with your ttt.. and welcome to our potsy world!

my doc office called me today and gave me the result of the cervical x-rays. mind you i allready have a disc herniation. and spinal rotation just below the herniation.. an big oychie there alone well it showed that i have degenerative joint disease (arthritis)at levels c5-c6 (that is where my disc herniation is) c6-c7 c7-t1..and tath there is inflammation in there as well.. now they only x-ray'd my cervical spine..I'd be curious to see what a full spinal MRI would show..i think that it would show alot.. But b/c of the results of the x-rays I am now getting that MRI.. that I've been needing for ages now of atleast my brain stem cervical neck.. hopefully they will do a full spinal MRI or do it in section..b/c i get some nasty pain in my entire spine and tailbone... I hope tha this doesnt sound bad.. but I'm glad that something showed up on the x-rays.. (not b/c i want something wrong but b/c i know that something is messed up in there).. and now maybe they will take me more seriously when I say I'm in pain.. and my head feels like it is going to explode! the nurse said that this could be causing my severe headaches. and possible the pressure/squeezing that i feel in my brain too... SO i am thankful that now i'm getting an MRI that i have needed for some time now.. my PCP left.. and a new doc took over.. and I' guessing that my old pcp really filled him in on my case. b/c they called here and asked me to come in b/c the new doc wants to meet me and see what he can do to help me.. I think that that is really nice! my doc who he is taking the place of was fantastic.. so I'll "meet" this new doc on tuesday.. But on one note I'm wondering .. I'm only 24 yrs old.. why on earth do i have arthiritis in my neck?? and so many odd abnormalities thru out my body?? yeah know what i mean folks?? I'm baffled! dizz

hmm.. well the creepy crawlies left.. but not the surging! UGH the neurology stuff is at a stand still lauren. I'm send ing my stuff (records) offf to TCI.. but that is going to take time for them to review the stuff and then waiting for an appointment OH MY!!!!!! hopefully this process isnt going tot ake forever..

oh god jan-- i read your post and i can feel your sadness. .. made me cry.. I know this has got to be incredibly tough on you and jeff right now... I feel at a loss of words to say.. but want you to know that you both are in ym prayers and my thoughts... and i hope that the docs can come up with a new treatment options... But bless you both for your courage and strength thru al of this.. hang in there jan.. BIG HUGS linda