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dizzygirl

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Everything posted by dizzygirl

  1. yeah i have a script for zofran.. the pill form isnt quite as effective as the IV form.. but helps some.. Uhm i can not take birthcontrol pills.... myperiods are normally very very irregular... so its interesting that ive had one 2 months in a row! Uhm i am only 26 yrs old so I'm not sure that induced menopause is something i want to do.. or even consider... and if i understand menopause in potsys triggers stuff... uhm i can tolerate provera... so maybe that is something to consider... thanks everyone for the pointers
  2. mm new one we just tried..blackberries.. yogurt (vanilla) and a little milk or icecream.. its good! Oh yeah a tweak to my strawberry smoothie.. instead of OJ you can also try passion fruit juice instead.. that is really yummy too!
  3. hey everyone.. last friday i was admitted to the hospital b/c for about 5 days I've been sick with nausea vomitting and severre diarrhea..(and i do mean severe..like water up to 20-30 times in one day!) .i also had alot of other symptoms like severe chills...shaking from the inside out...alternating with major hotflashes.. I wasnt sweating but my entire body except for my feet they stayed ice cold.. felt like it was on fire...and my brain felt like it was going to explode in side my head. SO this all started monday... now this is different from my normal Gi symptoms that i normally have... as if those where not bad enough... this new stuff takes the cake! So by thursday I was like Ok enough of this i was unable to keep food or liguids in or down.. called my pcp again.. come friday morning my period started... now the same exact thing happened to me in may roughly 1 month prior to this recent spell..... and it started about 6 days BEFORE my period started and i was so sick that i lost 8 pounds the last time... and this time around i lost an additional 8 pounds.. so 16 all together.... i had one small eppy in the middle of these 2 large ones. and i'm generally sick until my period stops. and fro several days after Now my end conclusion from my hospital stay was that 2 things are happening.. one that my pots is attacking my GI track/stomach... and in addition to that its be magnified my my periods.. that my body is reacting to the spikes and drops in hormones levels. now i know that alot of you get sicker then a dog around your period.. do any of you get the GI symptoms like this too? if you do what helps it? I was on a potassium drip thingy the whole time i was in b/c my levels where low.. and that perked me up by day 5 on it.. and zofran.. SO if any of you all get some pointers.. i'm all ears...I found the only thing that i could keep down was naked Juice.. which is very exspsnsive..its like 3.84 for a small botttle! its made from fruit puree and fruit juices...its yummy.. thanks!
  4. thank you ernie for sharing your story! ernie i am so very happy to hear that you have not fainted or paralyzed in so long and that you are getting better.. that is fabulous!!!!!!!! thanks you for giving us all something to hold on to..your and inspiration ernie! much love and lots of hugs linda
  5. mm fruit smoothies! i recently has jumped on the fruit smoothie bandwagon myself.. only thing i can drink that doesnt make me sick! Hmmm .. my personal favorite is strawberry bannana... take about 1 -1 1/2 cups of strawberrys a 1/2 of bannana.. 2 scoops of vanilla ice cream and a splash of OJ..OMG!!!!!! they are so good! I absolutely love them! I also buy and i dont know if they have these in the UK.. but they are called naked juice.. and its made out of fruit puree and fruit juices... the blue/blackberry rush is very good! happy smoothie drinking!
  6. I've been a patient of dr g now for a good 5 1/2 yrs.. and i have had isues with weight gain since i got very sick in 2002.. i had about a 90 pound weight gain in the spand of 6 yrs.. and its not all diet related.. I believe a bulk of it is medication.. i gained alot of weight on pxil and zoloft.. and in the last 4 yrs my weight has yoyo'd with that said.. i have seen dr grubb and thankfully he never goes on about my weight... just that he wants me to stay as active as possible.. and when i do see him and there is weight loss he encourages to keep up the god work so to speak.. I think that dr. g knows how devastating this illness is on us.. and he wants to help us however he can...even with recommendation.. though i know how it feels to be on the spot with your weight... now my next thought to chime in on other response.. as a general statement to other drs i've seen have been very critical on weight issues.. and tell me all issues are b/c i need to loose weight.. mean while not looking at the fact that rapid weight cause is acutally probably a casue of something ya know i wish you luck hun!
  7. good to know.. problem im having is i need to find a gastro.. who one is familar with dysauto. and 2 is going to stop telling me that all my GI symp are from STRESS!! Hello!!!!! that irritates me so bad! Yeah like stress is going to cause to me to have severe nausea for a wks straight at a time.. or to have projectile vomitting... and the list goes on... SO yea.. i was wonder! thanks for the info...how else might i get an accurate dx?
  8. can you have gastroparesis...even if the emptying scan is negative? DO your guts need to be acting up the day you have the test in order to get an accurate diagnosis? jsut curious.. thanks
  9. hey folks was wondering if anybody here as ever seen dr stephenson at the neuro institute at U of Penn in philly. and what your experiences where with this dr.. if you felt it to be helpful. thanks
  10. OH my word!!!!!!! i have to ad my adventure today with a crack pot dr!!!! I'm not sure weather to irritated and mad.. or to laugh at the ignorance and stupidity!! Ok.. so i've posted on here alot about ym severe fatigue and drowsiness and stuff.. so i had 2 part sleep study then i had to keep a sleep log for a month... So i went in today... Dr. said You have some apnea events.. not enough to do cpap.. i was like OK good... then he said the reason why you are so tired is b/c your not getting enough sleep...I was like did you LOOK at my sleep diary? He said you need to sleep about 9 hour a night.. I said well i sleep about 11-12 a night... he said would you like a sleep aide to help you sleep? i said NO going to sleep is not my problem! I can not stay awake!!!!! I'm sleeping on the average of 16-20 hours day! give ro take depending on the day. He said well you have excessive day time sleepiness.. you fell alseep very quickly for all of your naps.. 30 seconds to 1 min 30 secs. to fall asleep for each nap. Then he again offered me a sleeping pill to help me "sleep" I was getting irritated so i left the rm. and asked for my sleep study result to take with me.. Whoever heard of giveing out sleeping pill.. when you allready can barely hold ur eyes open!!!! i tell ya some of these dr's out there really concern me.. wait i take that back they out and out scare the heebie jeebiezzz out of me!
  11. earth mother thank you for the links!!!!! its very helpfull! i'm not obsessive about only eating organic.. but i am making changes and better choices...I personally figure conventional medicine isnt doing jack for me.. so i want to make changes in other area's and pay close attention to what i'm putting in my body..and i'm noticing adifference in my GI which has been one of my biggest issues since i was knee high to a grasshopper!
  12. OH MAXINE!!!!!!!!! i certainly will never forget dr. mullet!!!!!! brief insight to dr mullet 9we renamed him that) I went to this particular Er where my ans dr is.. b/c i was very sick and wasnt getting any help at home.. so i travel over 4 hours to go there... this ER dr was so insistant that i'd been to "his" er many times for the same thing and insisted that he'd seen me there before! i was like nope first time here.. anyways his "recommendation" to treat the squeezing in my head and the numbness thru my entire body was that i neeeded to pray more and become more spiritual. and that the reason i was not getting any better and getting sick is b/c i WANT to be sick and I DONT want to get better! and that i'm not spiritual enough.. needless to say i wigged and cried my eyes out b/c some time WAS wrong... Oh and when i began to cry uncontrollably .. he said well i can see where this is going".. and walked out of the room and turned arounf before he pulled the curtain shut he said i'll pray for you. then a few minutes later he sent the nurse in and asked me if i was suicidal.. b/c i told the doctor that i felt like i was dying. ARGGGGGGGGG! gotta love stupidity!!!!!!!!!
  13. oh i coudlnt resist chiming in on this ... when i was about 11-12 yrs old.. my mom took me to my pcp.. b/c my heart was racing.. i was getting bad headaches and i was dizzy all the time.. and it was worse.. the dizziness....if i bent over or stood up.....and i was fatigued... the old school dr. told me that i need to start dancing and eat more vegatables... yeah ok and when it was still happening 3-4 yrs later.. he told my mom that it was stress and that i wasnt adjusting to high school..Hello.. and that i should still take up dancing and keep eating those veggies! oh the power of a good vegatable! *giggling*
  14. hey thanks for the sunny tip!!!!!!! lol.. i know i too am tired of looking like capser and would welcome some color or "glow" to my face/skin!! one of course that isnt involve flushing or nigth sweats..LOL how cool a tint of a tan minus having to sit in the sun and be sick! WAHOO!!!!
  15. mestinon helped with my brain fog..when i was on it... brain fog is a really common symptoms of dysautonomia.. hope that you find something that helps you!
  16. hey folks.. In recent months as my health has been taking a big nose dive my b/f and i have been trying to eat as healthy as possible. one thing i have noticed is how my body reacts to foods... I've notice that i do not react nearly as badly to organic foods.. as i do to foods that are not organic. I do not get as violently ill. Uhm...its a no brainer that non orgainc foods are grown with pestisides and hormones/antibiotics.. and so on .. not to mention canned pre packaged foods are full of chemicals and preservatives to keep the food fresh and from spoiling. Well anyways getting to my point...to any of you organic food eaters out there.. do you notice a differnce in your symptoms based on the food you put in your body? ( organic vs. non organic?) I ask b/c with dysautonomia we are chemical sensitive.. and it kinda makes sense that we would be reactive to foods that have crud in them as well.. kinda like we do to being exsposed to an actualy chemical or pesticide.... Like i mentioned earlier.. we try and eat as organically as we can possibly afford.. and i notice a difference in GI symptoms and how i felt after eating.. where as i could eat the same exact thing that is non organic and i get very very ill..and am sick for up to 2-3 days after wards.( by ill i mean horrible gut pain stomach pain unrelenting nausea..diarrhea..dizziness-headaches ect.) I dont know this was something that i was thinking about.. and thought i'd throw it out there...and i'm curious to see if anybody else has noticed this as well?
  17. i'm sorry :0( i hope that the appeal process isnt a terribly long one HUGS
  18. wow thank you for sharing your success story with us.. it surely is encouraging and good to hear of ppl who acutally get better from all this... i'm really very happy for you!!!!!!
  19. Just eat pickles are your freaking serious!!!!!!!!!!!!!!!!!!!!!!! wow girly.. im so very sorry that your going thru this....i hope that you get some help and relief soon!!!!!!!!!!! thinking of you and sending BIG HUGS dizz
  20. uhm morning generally can and are rough for pots pts. has to due with your blood/fluid volume being low i believe. Uhm i realize with a baby at home you might not be able to take things slow in the morning.. but maybe a few tricks might be of help for you.. do you have somebody who can help you in the morning hours? with your daughter by chance? Uhm can you tolerate pickle juice? dill pickle juice is high in sodium... and you might find that it gives you a boost...your fluid volume and blood pressure... also bouilion broth as undiluted as you can possible stand it.. is also a good thing to drink first thing ...some one suggested that i keep bouilion broth in a thermos by my bed and rink it even before i get out of bed in the morning.. maybe you could try this... also have you tried compression stockings of any form yet? Uhm adding salt to everything that you eat.. and washing it down with water or some kind of fluid can help keep things steady as welll.. and of course gatorade or power ade.. is helpful to drink too... i know that trying meds can drive you nuts.. but i would really recommend getting on something to bring your HR down walking around at 150 all day everyday.. n wonder you feel so weak!.. there are lots of differnt combo's that you can try of medications... you can look on the site main page under treatment... there are different meds and non medical things listed there to help you with pots... i really wish you luck in getting your symptoms under control! I dont know how your doing it with a 10 months old baby.. wow god bless you! hang in there hugs dizz
  21. uhm yeah ive been on clonidine for about 5 yrs or so now..my dose has been the same for abit now.. since atleast novemeber.. and this stuff has been happeneing for about i want to say 3 yrs now..something right around there... i;ve been a patient of dr.G for about the same amount of time 5 yrs. im acutally going to see him in june.... Uhm I've made alittle head way in getting an appointment at the cleveland clinic to see a neurologist.. who has special "interest" in ANS disorders and neuromuscular disease.. i see him in the early part of may.. so Ive got my fingers and toes crossed that he can help me and figure out what the heck is wrong... In the mean time i had labs done to make sure my levels arent all wacky... so i guess now its the hurry up and wait game ........ thanks for the support! you guys are awesome!
  22. So this wknd i got hit with a bad spell of things... satruday evening i got hit suddenly with major bad weakness thu my whole body... i layed down and feel asleep for a about 2 1/2 hours.. i had a paralysis spelll in my sleep...when i woke up i could barely move my fingers or toes.. and my insides where shaking/quivering really bad... I felt like i had electrciity surging thru my head.. and my one big toe on my left foot... my joints and feet/hand where majorly afected this time by the "spell"every little joint in my whole enitre body hurt so very badly... I was extremely weak..even breathing was a great effort...and had bad shortness of breath.. and my heart felt like it was vibrating... my b/f came upstairs to check on me.. and he said that my face was a greyish-white looking color.. and i stayed looking that way all night long... i fell alseep and slept nearly 10 hours straight.. and woke to feel prretty much the same way i had the night before....i was up for a very short time sunday and went back to bed and slept another 6 hours.. and when i was awake i was too weak to move from my bed....i felt like i was going to die.. i felt so bad..........my body felt like ti was going to shut down.. like it was going numb....from the inside out.... Now on to my vent of frustration with medical professionals! I feel like im reaching one raod block after another.. Ive seen all the neurologist here in my home town.. ive traveled outside of here and seen dr's and im not really geting anywheres....my symptoms are getting worse and i dont know where to turn for help at this point...and i honeslty dont feel well enough to travel..... i guess im venting once again.. and im wondeirng what is up with turning grey.. ive done this before.. with no real explaination as to why... but i feel really horrible and these symptoms and how i feel all the time kinda scare me b/c im getting worse.. and im no closer to knowing what is really wrong.. and i feel that the only way any one might actually find out what is wrong with me is if im laying on an autopsy table seriously.. its how i feel.... i've been living with this stuff along time now.. and i dont normal freak with things even if they are bad... and im not freaking out now... i just really really dont feel welll.. and i need some answers!
  23. for the entire winter of 2002-2003 i had Costochondritis and plueryse (sp??)... uhm I remember a nurse telling me that you can get injections in between your ribs and stuff of contisone or a steriod of somesort??? It took me about 6-7 months to reocer from both of these things... uhm warm compresses on the chest help... motrin of course... and steriods..uhm medrol pack worked nicely for me.... I hope that you hubby feels better soon.. this stuff bites...
  24. ernie~ im sorry for your lack of responses to your visit with the new researcher... I know that i do not get on here as often as i use.. simple b/c i dont feel well... i would love to know if you made any progress and are any closer to getting proper treatment.. love and hugs ernie! dizz
  25. doctorguest~thank you for the tip....uhm quick question for you.. for about the past 8 yrs or so my lab work as far as my liver function goes has been coming back abnormal.. sometimes the with lab values high then normal other times not as high.. as my gallbladder has had flares of abnormal stuff there too.. the liver stuff has yet to be figured out... no explaintion for it really... i do not take vitamins.. and for medications im not on any new ones and havent started new meds in some time... anyways thank you!
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