dizzygirl

Wow.. I am so glad that dan and his family pulled thru.. and that he is on the road to recovery.. Stillsending positive thoughts and prayers... Linda

Oh MY GOD!!! I will absolutely cry if my appointment is cancelled!! I have totally run out of treatment options and doctors to treat me here at home.. and out of town... Dr. Grubb..I am just really praying that this appointment isnt cancelled.. I have been trying to get back in there for over 1 1/2!!yrs).. Oh man... this su**s!! Ok I will try calling his office in the morning to confirm my appointment.. thanks for the headsup..I was thinking of calling too.. and have felt like crap ola...and havent...

Hi folks.. I am getting ready to travel to see Dr. Grubb next thursday the October 6th.. my app. is at 2:30..I will be in toledo for 2 days.. and I am wondering if any of you are scheduled to see dr. Grubb on the 6th.. as I would love to meet some of you guys.. and actually talk to you face to face!! And give you a hug!! Hope to "see" you! Linda

Good for you Morgan!! Perse..I understand you felings.... I would be upset too.. I had a problem with that whole..grandparent dying... My grandma died June 6th,2002... of cancer.. and I was with her when she died.. and once docs learned of this.. they automoatic drummded up the PTSD thing.. and that all my symptoms where anxiety related...Lets for forget about all the Hospital trips with HR thur the roof!! any way perse I feel your Pain!!.. but on the flip side maybe you will be helping another potsy person... and that in of itself is cool!

hey pooh!! can you see me here in the canyon with you?? here I am !! I'm one of the ones flat on my back...waving a white surrender flag in the air... I know aht you mean.. my potsy crap seems to be getting worse and worse.. instead of better and better.. despite many attempted treatsments! Oh it si oh so frustrating! I came very close to a full blown syncope epsiode here about a hour ago...I was stadning there in front of the Cd player popping in a CD.. and low and behold I got really dizzy.. tachy.. and wobbley legged.. and my legs collapsed and i landed to the floor with a thudd... didnt go uncsious though.. thank god... but still makes you feel like poop! YEs I have to think that the season changes have some kind of effect on my pots.. wheather there is scientific proof or not I dont know... just my thought... anyways..every change of season I get blastd with bronchiuts or walking pneumonia. or some kind of respitory problem... HMMM? Hope that we all pull out of this canyan hole that we are in soon!

my my Nina!! you have been having a crappy run of icky stuff lately! I am sos sorry that your ankle is now in an air cast! that realy bites! I will be waiting at the finish line when you get there with water and gatorade!! I have faith that you'll make it no matter what.. and no mattter how long it takes you to do it!! Hugs Linda

I just thought of this.. as we are discussing the hairy legs.. well i can remeber being like 15..19 and propping one leg up on the skin to shave.. leaving my other leg to hold me up...(stupid stupid stupid!!) Well i would always wonder why my leg would turn so purple... and then once I got done shaving.. I'd stand on 2 feet and my legs would feel so freakin' weird!! Low and behold its wa the pots!! didnt know it then though.. I have now revised my shaving techniques... I had gotten to wher i would sit on the edge of the tub and shave the furr of.. but even that is now energy zapping.. these days.. SOO.. I discovered the Intuition razor.. they are alittle pricy.. but much easier the trying to use soap/and or save gel.. and trying to shave.. these are easier its all in one!.. and I now usually only have to energy to shave one leg at a time.. and that is on a good day!! LOL anyways thought I'd add my 2cents worth again..

Hi.. In regards to your bleeding changing moles.. you really need to get them checked out... when I was 12.. i had a funky mole on my upper arm.. and it changed color.. and developed red rings around it.. and it too was raised... well I had that mole removed.. and the doctor told me that I it been left untreated any longer.. that it would have turned into skin cancer... I dont mean to alarm you... just wanted to share my experience.. as I am now.. the mole inspector! so yeah even your regular MD can check things out.. and go from there.. but it is wise to get it checked out.. especially if you have more then one funky mole thing going on..

Hi..I have similar problmes with rectal bleeding... I seen a GI doc... and I am suppose to have a colonoscopy done...to se if they can find the source of the bleeding things in the GI region get very painfu...l find that I will rock back and forth...I dont know why I just do it automatically.. I have no suggestions for pain relief. sorry.. I wish i did.. good luck.. and I hope that your daughter feels better soon..

Hi pooh..i was thinking of you... and wonderinghow you where feeling... hope today that you are feeling better... HUGS to you! LInda

Hey Sunfish!! so sorry that I am late here... but I just read through the entire post.... and I just wanted to say that I think that you are awesome!! I know that this is a very rough time for you to say the least... but you have pulled throuhg it with such determination and pure "STRONG will" I think that in the long run that you will see that cutting back was the best thing for you... My old social worker (who i still talk to from time to time) often ( more recently) likes to tell me that "Linda school will always be there no matter what age you get... but what is good is school going to do for you if you arent around (or able) to enjoy it!" So I just wanted to add my support and encourage ment to you... I hope that you tummy feels better soon too... and yes enjoy those brownies!! they sound devine!!! MMMMM!! I think that I will go eat a Reese's Peanut Butter Cup now !!!! HUGS to ya Melissa

Hi.. I just wanted to add that I had an experience here not too long ago (maybe 1-2 wks ago?) where I had passed out and then could not move my body or open my eyes when i came too... I dont know what its from... I have had experiences of paralice (sp?? sorry cant think tonight!) during that night.. (ie.. making up not being able to move..) and first thing in the morning... They actually told you to breath into a bag? How are you suppose to do that if you cant move? geez... well I hope that they can find out what is wrong and help you.... good luck

Pooh I am sorry that you are feeling so not your self today... i agree with you that your hormones will play a very big part in moods.. I hope that you feel better soon.. and feel calmer ..

Dizzy Dame.. wow.. I can totally feel and understand what you are going through! I know that menstration makes my pots much worse.. and theat high tachy is not cool.. I hope that once you get back to GA.. that maybe you can find a doc to help you... maybe finds a med combo that will make you feel better.. if not functional.. HUGS to you Linda i hope that you feel better soon!

Hi persephone.. oh my.. they want you to do anyother tilt test!!?? my goodness I hate those things!.. tha last one I had done in July..I crashed hard after that one and havent been the same since!! I wish you well and hope that you too can find some help!... I know what you mean about the ER.. iavoid it at all cost.. itsno use going there.. they always say the same thing.."there is nothing that we can do for you here... you need to follow with your cardiologist's and neurologist.. the experts.." so when I am bad I stay home!! besides my bed is much more comfy then a hospital gurney!..

Hi.. yes I agree that she is very good at history and testing.. and she is thurough... I had my appointment with her and then she decided to do a tilt table test.. and I had it done then... and then after that I was suppose to have the blood volume with hemodynamic test done... but they were ubabke to get a vein.. or a big enough vein to do the test.. so I was unable to have it done..I was able to have the majority of testing done in 2 days.. But I also agree that they fllow up care is not ideal... but worth the visit... good luck to you..

thanks... no harm done.. dizzygirl:)

Hi.. my tachycardia is not anxiety induced...I have been living alone now for about 9 yrs... with the exception of the past 5-6 months.. but when I move I will be living on my own... SO most of the time I have dealt with this potsy business on my own.. without much help from anybody... The only time that i get anxiety and panicky is when I start having trouble breathing...in the middle of the night.. and when I have bad alleric reaction to medicatio and cannot get to a phone I hope that I can get some help with this tachy..!!

Lauren Hi! Yes the good thing about living in this appartment building is that I will be living less then 2 blocks from Hamot trauma center.. and then about 5-7 minutes away from St. Vincents were my old cardio doc is.. so a cab either way wont be more then a few bucks.. thank god.. but it still might be a bit before I get in there.. I am remaining hopefull though.. yes this tachy business is scary ... I wish I wasnt having it.. but I am.. thanks! Linda

Hi all... I am wondering..I spokr with an NP today... and she wanted to know if the message I left at there office was right.. that my resting HR was 204.. and that it went higher with exucurtion... YEs ma'ma it was... well she said that with such high tachycardia like that.. that it is just not POTS related tachycardia.. that we are dealing with a whole new level and kind of tachycardia...and that she said it is time for me to be seen by an EP cardio.. I'm like that is who my normal cardio have been EP docs.. and the one locally and the othere one in the state I live in.. both will not treat me anymore because.. they say that there is nothing more that they can do for..(ie. tried many many meds with no avail!) SO this very nice NP said that well you need to bee seen by an EP before you come here.. and get hooked up to an event monitor.. so we can see exactly what you heart is doing beating 204-240 bpm... its kinda scary.. actually alot scary.. this NP and my old cardio called told me today that I need to go to the ER immediately if my HR is over or near 200 again.. at first the nurse at the local office said that I needed to go to the ER if my HR is over 100.. and I am like come on now that is unrealistic.. if I did that I would never leave there.. then she sai if my HR goes to 140 or above and lasts for more them one hour.. that I better be on my way to the ER.. and not driving or riding the bus there.. (i'm Like well geez!.. not like I can drive anyways!!) because chances are I would/could pass out.. then said that if my HR is over 200 I need to MOST DEFINATELY be at the hospital.... I am guessing that my theory on riding it out an home isnt going to cut it...considering that my chest hurt so very badly yesterday and today.. OMG! it hurt to breath.. and my head and eyeballs hurt just as bad... today they still hurt some but arent bad.. and my HR is now in the low 60's.. Go figure! the NP put me on a new medication... that is being used to treat pots and manage pots.. called cymbalta.. she said that it will help calm down my ANS system.. and help me till I can make the trip to Ohio.. and also gave me Levson to take for the tummy...cymbalta is originally used to treat depression.. but they are finding that it does something to the neurotransmitters in the brain and helps things with dysautonomia.... and that once I get there that they will thuroughly go over every thing else going on with me.. I thank god!! But I am curious about this tachycardia thing... and kinda worried too.. hey good news today!! I caled that apartment building that I am waiting to get into and talked to them and told them that I was waiting for a wheelchair.. and they changed my status to the need for a handicapped accessable apaprtment.. and guess what??!! I am #2 on the list and one will be opening up in a few weeks and if the person ahead of me doesnt want the apartment for some reason.. i will be next in Line!!! 'm lke OMG!! that is so freakin' wonderful!! AWWW!! totally made my day...so I am praying that I will get this apartment and that if I for some reason dont get tis one that another one will open up soon... allrighty folks thanks for listening to me ramble..

Hi... well as achild I was always very very thin..and I had pots sysmptoms then too.. well when i turned 11-12 yrs old my pots got much much worse (we did not have a diagnosis yet) and I started to put weight on.. not enough.. but enough for my family to notice that I was getting "chunky".. right around this time I also started menstruating.. and like went haywire then !! Then when I was about 16-17....I gained weight... then again this past 6 months I have gained 23 pounds.. which is not cool!!.. go figure i cant keep food down or in for that matter.. and I gain weight!! how freakin crazy is that! So I have to say frob being on both ends of the weight spectrum.. and rught in the middle.. that my potswas stiil there to its severity no matter what my weight was..(sidenote.. being a heavy gir does have some effect on things I thinl too)

Nina you go girl!!! I think that it is good to set goals... but PLEASE!!! try not to over do it.. I know easier said then done.. just take it slow... and remeber that we are all rooting for you!!

wow your guys really put a smile on my face and makes me feel all teary eyed!

Hi all.. thanks for your replies... I have no explaination for todays BP issue other then.. my lord nothing surpirses me anymore when it comes to pots.. And I cannot wait to "officially" get my wheels!! they said that it will take about 30 days.. so I am praying that there will be no burocratical surprises instore for me in regards to medicade/medicare... I actually am starting to feel alittle bit better the I have felt over the past 2 days...my Hr is starting to come down. its about 180-ish.. and I dont feel so syncopal...I scarfed down some green olives and a healthy choice meal. and of course the gatorade and water... so high doses of salt.. YEAH! and its off to bed I go.. b/c dizzygirl eyelids are SOOOOOOO heavy.. and my body is so pooped out! thanks guys.. you are really help keep me going.. when nobody else "gets it" I know that i can log in here and enter my virtual potsy world!!! Wish that I could actually talk to some of you face to face though!! Hugs Linda

Hi folks.. well just a quick run down yesterday tachycardia hit me full blast.. my resting HR is running about 204-210...and any movement no matter how small it may be.. sets it off even more.. and it goes higher.. its really scary.. It is still running quite high today approx 160-180 resting rate.. and spike up to about 216 upon sitting up or standing or movement... has toltally wiped me right out.. Well i dragged myself to the Rehab place today for my PT evaluation for my wheelchair.. Well that went well.. my HR and BP explained themsleves... My question is... she checked my BP and then rechecked it.. and she said that my BP was 150/0======== meaning that she could not get a bottom reading... and I was so syncopal feeling tht I could barley hold my head up or see straight! and she would not tell me what my HR was.. all she said was it was quite high.. and I kinda figured that on my own.. with how I was feeling.. I felt like that for a good 20 minutes.. and then it cleared up some.. but my BP.. now that is what was weird to me How can you have a top number of 150/ over nothing? and the top # is high for me.. considerering that I runn anywhere from 60-122 top number.. Have any of you experienced this weird BP thing? On a cool note.. I got to test out that power wheelchair outside... ITwas AWeSOME!! I got to buzz around on it from the hospital up to the busstop.. which is about 3-4 city blocks... They PT lady and the Wheelcahir guy asked me how I was geting home and I told them I was taking the bus.. there like well how are you going to get from herre to there.. I said walk.. The lady (darned if I can remeber her name!) she is like OMG! No you can not walk down there not with how you HR and BP is.. so the wheelchair guy said well why dont you give that wheelcahir a test drive to the bus stop and I will meet you there.. So I did.. And I didnt feel self conscious or weird buzzing down the sidewalk.. like I thought I would.. I felt so very relieved to not have had to walk all that way.. had I had to of walked down to the bus stop I would have hit the pavement in no time flat.. and the HR of mine my lord.. with the heat.. YUCKY! But anyways it was really cool.. and it handles good on the curbs and road and sidewalk..I got to play around with the speed too..(LOL>> HAHAHAHAHA!) Dale Earnhart Jr.eat my dust! But anyways they said now that it should take about 1 month for medicaid and medicare to do there thing.. so folks I gives me great relief knowing that the ball is movig on things.. I just feel that even though my health is in the crapper right now, that hope is waiting there is the horizon..w/ the wheelchair.. upcoming app. w/ Dr. grubb and still waiting for a apartment to open up.. but I feel hopefull!! Love ya guys!