dizzygirl

NW Pennsylvania.. yucky winters..(gotta love lake effect snow!) and humid summers...im 30-ish minutes from both the NY and the Ohio line

hahhah thanks for the laugh! this is too funny

hi ya firewomen welcome to our corner of cyber world! sorry you have pots BUT glad that you foind us... wanted to chime in on this paralysis issue...Uhm I experience paralysis spells.. myself.. and they totally stink! I will second the recommendation of find a good nuero.. But i can also relate to how incredibly frustrating it is to find one! Uh you can look up in the phone book... for your town/city's local muscular dystrophy clinic/organization .. and explain to them what your are experiencing.. and they maybe able to set you up in ther clinic to me seen by a neuro-muscular doc.. which by the sounds of what your talking about.. is what you need.. Have they ever checked you for periodic paralysis? its my understanding ( dont quote me).. but you can have periodic paraylsis.. and not have a raise or drop in your potassium levels.. and still have it.. Uhm you can google Periodic paralysis...or uhm hypolalemia or hyperkalemia )sp???).. and you'll find alot of information... I wish you luck and hope tht you can get into to see a neuromuscular dr! and again welcome!

YIPPEE!!! so happy for you juju

ive had oodles of scans done.. too many to count...

ahh ok.. makes sense.. i was just curious.. and needed alittle bit of clarification.. be careful on your dates catherine... some men are pigs...! ..

cathielu.. while i think it is great that you are having such wonderful improvements.. and that you are getting a life back driving working dating.. that is wonderful and a blessing... BUt I do have a few questions... if i may ask... What makes your OI life threatening? Ive had my Bp drop off the map alot.. and have had tons of Bp's where ive had no bottom number.. or had a botom number but it was too low to read..Uhm even with Bp"s that low and non exsistant Ive never been told my Bp's are dangerous..and) i am a fainter--the most dangerous part for me with bps' dropping so low is the acutal falling in a faint and hurting myself) or life threatening.. same with Heart rates.. Ive had extremely high Hr's over 200bpm.. so im wondering how your was determined life threatening.. do you have a differnt form of dysautonomia? so I guess im wondering what criteria made your OI life threatening? I dont mean to sound confrontational or anything.. and im very happy for you that your having such success with rocovery anybody living with this disorde and gets improvement of any kind is truly blessed...I hope that you stay on the recovery path... I was jsut curious tho about my question for you above...

hmm i tried to send you a pm! but the site keeps booitng me off of here! click on my profile on here and click my website.. mine is et to private.. but send me a request and ill add some welcomed potsy pals

hi juju i just wanted to kind of second what lloppyllamma said about the whole tasting spoil but sint spoil thing.. Uhm I get this alot.. and chalk it up to pots.. b/c one day i can for instance.. pur a glass of milk.. and it will taste spoiled or funky to me.. and i will dump the glass.. only to the next or something pour another glass and its acutally fine..(it took me a long time to relize that it was me not the food or liguid.. or my ans/pots.. causing the food and liquid to taste yucky.. i dont know why it happens but it does.. i know youve been going thru alot.....dont be so hard on yourself girl..or im gonna have to sick gorgeous goerge on you!! and he is so ""RARRRRRRRRRRR"..olol(he's alot like spencer ya know..lol.. a big baby!) anyhoo be kind to your self.. and pump the fluids in...it ur still yucky tomorrow then call ur pcp.. and call the restaurant you ate from.. did your hubby or son or dad get sick from the food? or did they order something different? hopefully you didnt eat bad sauce juju.. and its just your pots acting up.. it could be that you pots got in such an uproar from going in the heat that this how your body reacted. to the food.. take care.. and stay the heck inside! or ill put george at your backdoor !!! lol hugs

uhm i dont have any answers why as you have joint pain.. but i wanted to throw out a i cant relate to waht you are going thru!! i suffer from horrible joint pain as well.. at times i can barely bend my finger or toes.. or move my wrists or ankles...it unknown why im like this only that i am.. wanted to also suggest a few thing to help...1. i know that when joint pain is really bad that they last thing that you want to do is move the sore puppies.. but try and keep your joints moving...it hurts.. but not mvoing will make the pain and stuff worse...also aspecreme.. to rub in the jopint big or little can help... uh ive found that TYlenol arthiritus does helptake the edge off.. i have not be dx w/ arthrisitus.. but these pills work.. you can get a bottle of tylenol arthritus at walmart or a drug store for about 11-12$ a bottle.. it is in my opion worth every penny if it gives relief.... hope you feel better soon hugs

WOW!! that is AWESOME!!! thank you so much for being one of the good guys... or girls... in join the fight to raise awareness for us potsy folks.. it thing it wonderful that there are doc like you willing to stand up for this disorder.. and education is the key to moving mountains.. thank you!!!

Oh yes.. i know that surgery for chiari is not a "cure" for dysautonomia.. ive been doing alot of reading for months now.. on chiari... and surgery is not something that i will venture into unless it comes down to the nitty gritty and all else has failed....i want to try all other treatments first. Part of the reason why i choose this particular doc is b/c he is familiar with chiari.. and he has interest in the field.... and b/c ive been told by several people that he is conservative in performing sergery on folks w/o trying other options first... what i dont need is somebody telling me that surgery is MY only option....and have it be something that i totally regret doing... BUT on the other hand im so glad to finally be getting some answers.. i was talking to my b/f this evening at dinner and i began to cry b/c its been a long haul...and i feel a glimmer of hope.. if nothing else to have answers and not be shrugged off as a nut case.. and im anything but a nut case...little goofy but no looney bird...ive been suffering for a long time... and i know that this is not going to take my pots away.. but like i said it is hope.. and some days hope is not something that i come by easily... and any glimmer is something to hold on to I do plan on asking for references/referals for other opions.. just to be on the safe side... My appointment is scheduled for october... they wanted me to come out in the next few wks. and be seen but living on ssdi.. that is so not possible!.. so i scheduled for october.. and if i can make it sooner.. then i just have to call...so oct is when ill get new MRI scans and stuff done it does bother me tho that i ve gone some many stinkin yr. and nobody has said anything... reminds me of when i was about 13 or 14 they'd have those in school scoliosis exams.. well i ended up being sent to shriners childrens hospital.. and they tols me OH no you dont have scoliosis.. only to find out when i was 15 from a chiropractor that my mom took me to that oh yes you do have scoliosis!...... it does me ake me wonder how some ppl sleep at night.. is chiari like another pots thing? meaning that it is not easily recognized by doc's? hugs dizz

WOW~! Im am flabbergasted and in shock!for a few reasons! I think ill start here.. Ive had my MRI and CT scans done here at home... and the radiologist who read them was not really "equiped or trained" to know what to look for.. so the results of my scans where fubarred in my opion... thankfully i got some good referals from some of you on here for 2nd and 3rd opions! Well I sent my huge stack of films out.. and got a call back immmediate on the same day the films where recieved. another wow.. Well the dr that i sent them to was so surprised that this stuff hasnt been addressed. He told me that i have some very serious problems with my spine.. and tht was he can see even in the poor quality of the scans.. is that issues in my cervical spine alone are severe and as it stand now require surgery... not to metnion he said i have alot fo other things going with my spine.. but did not go into detail... only that he again cant believe that i ve gone this long with out help. He also informed me that i do indeed have chiari going on... he believes.... that the problems in my spine and brain are playing a very BIG..BIG part in the severity of my dysautonomia... he is not saying that treatment what ever it ends up being is going to be a cure.. but that these issues are causing me to be where i am now. SO I will be traveling to WI to be seen.. and to have some more (better quality ) scans done to get abetter look at things... and depending on how those scans looks and how other tests and things come out.. we will go from there I must say that this feels surreal... its not that i want there to be serious things on .... but ive only been saying now (how long have i been on here) that there is something wrong other then pots... and i really feel in my heart of hearts that im on the right track or road for the RIGHT treatment maybe even to hope that ill have an improvement in quality of life.. god i cant even remember what its like to not feel as ive been feeling now for the past several yrs. 13+ yrs is too long to have to wait for answers... its inhuman and insane for this country i think.. heres to hanging on to hope kiddo's! i pray that this leads to improving health for me. any improvement at all would be a blessing to me..

aww! i also love to see the photo's that you post of your animals!.. OMG they are so cute..kitties too!..I love the pic of the goat in the back of your car! hahahha! I know if i would have buzzed by you on the road with a goat in ur back seat i would have laughed! its so cute and funny! thanks for sharing....looking forward to seeing more barnyard animals!

Morgan... Ive tried responding to your PM several times and it will not allow me to send a reply..i keep getting kicked off........just wanted you to know that i got your message and i called the MD office and am awaiting an appointment thru the clinic to be seen.. i thank you so much for the info! i wish you the best of luck in treat ment.. and BIG hUGS on finally getting some answers! HUGS~!

hi IM wondering how you folks combat fatigue..and by fatigue i feel that the word "fatigue" is an understatement in what im experiencing... Im gettting down right exhausted just from trying to chew food...here a few wks bad i reached short distance for toilet paper in front of me.. and it was like i was reaching and picking up a hippo or something... i was irritated in at the level of exhaustion that i felt from something so simple... I spoke with my pcp yesterday about the level of fatigue or exhaustion .. and he said there really isnt anything that he can give me to try.. b/c of all the other issues that i have going on..due to the complexity of it all.. he said there are stimulats available but that those would not be a good idea for me to try,... and try and hold out for my Rhuemy appoint in august. So I feel somewhat desperate here.. in asking for pointers.. b/c i can feel the fatigue in my muscles so bad its unreal. and im wondring what on earth has triggered it to get so bad....im trying to keep as active as humanly possible... but my activety level is frigtenling low...i feel like im sleeping my life away.. i try to fight the urge to sleep and in the end only end up sleeping more.. or getting more OI symptoms if i dont give into the need for sleep... it makes me want to cry...where has my life gone! its gone to the sand fatigue man :/ any advice is greatly appreciated thanks a bunch

wow sorry im so late in responding.. Nina i hope that you are on the road to recovery! and that you do OK in your clas tonight .. wow! take it easy hugs

i have problems going in the sun too maxine...there are days that if i hae to go out in the heat that i get instantaniously sick.. i try when at all possible to not go outside on really hot days.. and for me i do not go out in the heat if the temp is over 65...i do not tolerate it much warner then that...I know its not always possible to do this...but after too many times of vomitting and spending the next day or 2 on the potty.. going out after 8am is like out of the question most days... I dont know how fesable this is for you to do But coudl you go out afte the sun goes down? and if ou have to go out during the day.. can somebody go with you.. drop you at the door.park.. then picknyou up at the door make sure the air is running in ur car? and also maybe try and figure up to what temps outside that you can tolerate in the heat? your not alone girly... I have virtually not tolerance at all for going out in yucky hot humid weather...Im a house hermit most yr round..except for the month of september! I normall feel well that time of yr.. rest of the yr its too hot to too cold for my dysfunctional potsy darie-air hope ur feelin' better love and hugs dizz

hey.. for the past few days ive been feeling like my Hr is pausing or that it wants to stop.. IM not quite sure how to describe this feeling other then this way... when i get this I have a strong yet. slow heart beat whoosing in my head and ears.. im already laying down and not moving.. and i get horible shortness of brath like ive just climbed 20 flight os stairs or something.. even tho i havent moved. it comes along with increased idzziness and lightheadenss... and my vision is all squirelly. and the oh so nasty chest pain for those that expereince this what do you do for it?? I talked to my cardio about these symptoms before...havent really gotten any answers yet.... its certainly is scary to feel like your heart is going to stop or that it is pausing as well.. thanks

Uhm I ve had both my colonoscopies done directly in the hospital.. you can request it to be done in the actual hospital instead of a surgery center or something.. I know a lady called before hand to get my info.. and after i gave her my medical history i was scheduled at a later time for a hospital procedure instead of a surgery center one. Uhm i was well monitored befoer during and after the procedure... I do not remember what my BP and HR did for the test.. I was out cold for all most all of it.. I had no actual problems from the proceddure itself.. the prep stunk.. and i fainted... they used half the normal amount of drugs on me in stead of full doseages b/c of my BP issues.. and that worked well.. i still was out for it. they used half veret vered? sp??? and half the amount of demerol... the only problem i had afterwards was in recovery my pulse Ox dropped in the low 80's..b/c i was forgetting to breath...im guessing and ANS response..drug response. IM thankful they ony, gave me half the doses of meds good luck with your procedure!

thank you all for your support and suggestions...

im so sorry that you are feeling so poorly amy many many big gentle hugs to you!

smiles~ hi~ Ok here is what i had to do to get my powerchair.. it was a lengthy process.. with alot burocratical??SP?? crud to jump hoops thru... first thing is.. you have to talk to your pcp or your primairy who ever doc is.. and ask them for a prescription or something.. uh referral for a power chair or schooter.. and i want to recommend that you be very specific and up front with what you want in a power chair before the prescription is written out!!! then either you or the doc contact a place that sells wheelchair powerchairs.. medical equipment...Uhm.. this is what took the longest for me.. was the time inbetween the script and the company processing the order! depending on ur insurance it should *hopefully* pay for part if not all of your powerchiar... Uh then you may have to go thru a pt eval for the insurance company.. and it helps if you have letter of support from your treating docs... explaining your need for a powerchair. Uhm then they process thru insirance and hopefully it is approved and you get a chair... Uh you do need to have/provide proof that you need a poewerchair verses a manual chair.. again that is why its important to have docs write stuff for you to back up your request... and might a recommend a chair for you.. I have a jazzy 700?? i believe it is called...the guy who helped me with getting my chair told me that this is the cadillac of powerchairs..lol.... and i have a captains seat with a high back and head rest. and my seat reclines back.fully... i recommend a reclining chair.. that also has a foot thing that comes up.. b/c (i dont have a foot thing) I can recline but then have no where to put my feet really.. and i asked for my feet to be able to come up too.. and was told that would make the chair too big! so be firm with them.. and also there are powerchairs that has a button that you can push that will recline you and pop your feet up....verse flipping a lever,,,i inly suggest that b/c sometimes if you sudden loose your energy and strength.. you can just push a button.. also ask for cushions.. it will make the long time sitting more comfortable.. oh and a cup holder.. yes they have that!.. uh.. oh and you can buy a cervical collar pillow that you can put between the head rest and the chair to give your neck something to rest on if you lay back.. ive found this to be WONDEFUL!! just a few pointers to make your wheelchair process specific and wahtive found to help me.. hope that you have success...

so i went to the CC yesterday.. and i must say that im quite disappointed in the care and the attitude that i recieved. it put me in tears I feel the it was a complete waste of my time my money and my extremly limited supply of spoons and energy i had to travel there alone! OK nothing potsy was really adress.. most of my questions where blown off and said that that isnt something that is dealth with in that office..or just plain ignored... so i got a boat load of referrals.. to docs that to be very honest.. i do not have the finanical capability to travel back and forth to 5-6 times over the next 2 months... not at 80 dollars a trip..and i dont have the faith that they will do anyhting anyways... the dr was annoyed and standoff ish.. ive seen this doc before and i never had issues.. and now that i really need help i feel that i was "wasting the dr's time"... isnt a doc that treats pots suppose to be able to help or try to help with pots symptoms? that ARE potsy things! i mean the only thing tha was recommended to me was to go to cardiac rehab.. and i asked how am i suppose to do that when im getting worse? and can barely function most days? response.. this will help.. well you know im all for trying cardiac rehab i have some real concerns tho before i do this.. and some even bigger concerns for as why im getting worse.. i dont mean to sounds or look like im not willing to try something to get better.. b/c i am i have i do and i am willing to in the future... But there is something wrong.. last weeks spell was even address i started to mention the bee stinging and i was told to see a neuro b/c that is a neuro problem.. do you all iknow how many neuro's ive seen in the couple of yrs.?????? I mean really! I have a neuro here at home that ive spoken with about this.. as well as pcp and cardio.. and my primary pots dr... they all dont know.. i feel really frustrated.. im about at a loss of where to turn...and honestly am quite tired of being treated like im a looney bird... when i know in my heart that something is wrong! something serious.. the things that im going thru dont fit with pots.. and im getting worse... the doc actually told me to open the phone book and find a doc to treat my pots and other things at home... Uhm Ive seen 3-4 neuro's in my home town.. 3-4 cardio's.. not mention a handfull of other docs.. come on the town i live in isnt that big...!... ive seen the docs that are here.. and they can not help me.. the point i was trying to make and explain was that it wasnt that my dr's here at home werent willing and ddint try to help me b/c they have.. But they have hit roadblocks.. and my level of symptoms and the fact that i havent responded to treatments.. over the last 5 yrs.. there is nothing more they can do for me.... why is that hard to understand? i wasnt speaking badly of them.. just telling thr truth.. that they dont know waht to do for me.. and that is why i was there.. I was upset yesterday.. and potsy..and wouldnt you know that my BP was perfect yesterday for my appointment? depsite how i felt? in order for me to get to cc.. i drank 2 cups of undiluted chicken broth.. to give me boost.. and it certianly gave me pressure a boost.. tht is why my pressure was normal.. tobad that my pressure "being" "normal" ment that i felt better! thanks for letting me vent....

Is CFS considered a totally seperate issue from pots? I guess im asking can you have pots AND cfs? Also.. for those that have CFS.. and fatigue from pots.. what do you do to help combat this? and how does this exactly work.. i mean do chronic illness's causes cfs? Or is cfs something that is kind of there BEfore a chronic illness jits you? how exactly does it work?