dizzygirl

hi I hope that your surgery goes well.. and that you have a wondrful thatksgiving feast! good luck.. please let us know how you are doing once you feel up to it.. Hugs Linda

hi am sorry that you are having such a hard time with tachy.. i can relate... Um I get tachy no matter what i am doing..my typically resting rate these days runns between 115-128.. on rare occasion my hr is less then 100 and in the high 80' nd 90's.. and the nurse will tell me that WOW your hr is high.. and for me (on my own tolerance level) that is slow...or slower i should say.. Uh lets see.. where was I going ...Oh yes.. i do get chest pain while i am really tachy.. and after I have been tachy..not much relives this... sometimes if i take an extra 80 mg of propranolol it will help with the feelings and things that come along with tachy spells.. oh and when I am tachy I lay down for a while.. and I will lay down in a very dark quiet room... alittle on the cool side.. and i find that laying on my right side sometime helps witht he pressure in the head and chest... my tachy last any where from an instant tachy jump.. or to a few minutes toa few hours to a few day at atime... and it happens ALLL the time.. I never really seem to get a break from it... oh and during tachy spells.. (variieying from time to time) i get nausea.. chills..flushed.. or hot or cold..freezing feet.. headaches..pressure in the head and eyes.. as for activities.. it will depend on the level and intensity of the tachy that i am having.. it it is mild I will try to do small burst of things.. sit or lay down and try again... most of the time its is really out of hand and I dont even bother w/ activities that are requiring me to stand ot sit up...I will do small things like listen to a CD that I really like.. or crochet.. as that relaxes me.. and i enjoy it , and can typically crochet with out looking at the needle.. so i can have my eyes closed or something weird like that... ok..mom4cem i really hope that you can get some help and relief from your tachy... hang in there!! hugs to ya dizz

thanks.... the problem here in my home town is that b/c of the insurance that I have no endocrinologist will accept medicare or medicade.. so I have to travel about 2-4 hours depending on which way i travel.. clevleand or pittsburgh...for an endo.. there was one endo in town i tried to get into to see over 2 yrs back.. i waitied for overa yr for an appointmant.. then once i got one and WENT to the office for the appointment.. they said that "HE" was no longer in practice there.. that the endcrin clinic had been closed down..! so ..hmmm...will have to do some digging here...

hey pooh!! girl i totally understand what you are saying about the whole med thing and quality of life....I honestly dont see how it would hurt to wait until friday to start a new med.. I mean if you are Ok without it.. (that smy opinion).. and I think that you are entitled to a nice holiday dinner.. where you can feel human.. and not have to cancell last minute.. if you have a bad reaction to the med or if it causes a bad pot related reaction.. socailization is important and we have to grab it when ever we can.. its good to be around people and have a focus other then.. meds and health issues.. (sorry I hope that didnt sound harsh or rude..) I just mean that its a healthy mix.. as for many of us.. its easy for pots to become our life.. as it effects our life in every aspect... i have a script for provigil to help w/ my severe fatigue.. and I am chicken and afraid to start taking it.. though I have it filled.. I'm sitting on..(have been since october!).. So POOHBEAR you enjoy your holiday and your guest and you dinner!! you deserve it girl!! let us know if you had a good time!! HUGS to you Linda

thanks!

hey ya folks... i've been meaning to post about this.. but have been kinda distracted latley!! Well I got a call from my gyno doc last friday before I left for Ohio.. and my hormone levels are all wacked out.. the nurse on the phone said that i need to come in and bee seen.. and talk ot the doc about my treatment options.. and try and find the cause of my "irregularities in the hormon department! She sadi that chances are that that is why i have been bleeding (period bleeding) since august.. and I am scheduled for a ultra sound once again for saturday morning... I'm wondering if these wacky hormones of mine have been to blame for my bad potsy episodes lately.. I passed out twice last week.. EEWW also.. I seem to have a "lump" of some sort that is under my arm.. in the arm pitt..in the right arm... I am wondering if maybe my lymph nodes or something are swollen?? maybe the casue for that "mysterious lumpy thing" is typically is very sore.. aggrivated my shaving the pitt or putting deodorant on.. or touching.. OUCH! it sinst a lump that is like always there.. but rears its ugly head...has been this way for a while.. stupid of me not to get it checked out! but anyways..they put me on Provera.. to stop my bleeding... thank god! Oh and I finally got a copy of that MRI report from July.. and it shows a cyst on my pineal gland and my pitutitary gland.. Dr.g looked at the report..and he tried to open the CD to look at the scans of my head.. and the CD wouldnt open.. so I am going to try and get my paws on the actuall scan and take them with me in jan. I feel that having cyst on both glands that control and regulate hormones and such.. is a key to some of what is wrong with me.. especially considering that the pituitary gland is the master gland of the hormones.. so folks..some weird stuff going on here.. hopefully can get to the end of it..

Hi roselover... I wanted to adda met oo to the mix.. my body temp is typically running the low side.. about 94.5-95.4 and if I am running a slight low grade fever.. even if my temp is a "normal"98.6 I consider that a fever.. as its not my normal temp.. and anything higher.. obvisously a low temp.. Um.. I chalk it up to a potsy thing.. as I have always been this way... and I also get horrible night sweats.. had some bad ones this morning (about 6 am...) my hairy was damp with sweat.. EEEEWWWWWWWWW! i typically sweat in the upper half of my body.. under my breast. neck and head...and hands too.. i get alot of cold hands feet and nose...and chills.. am going to bring up to Dr. g in january...when are you going to toledo? I will be there on the 14th @ 1:15... good lcuk to you

hwy guys... just thought that i'd pop in and say hey!I am feeling alittle bit better then i felt yeaterday... my rash is allmost all gone and I'm nnot so red looking.. the prendisone is really helping.. though i must say that it really makes me very thirsty after taking it...my dose is being gradually reduced.. i will have to make a note to myself tha prendisone helps the itchies for future reference!! as this ahppnes quite often!! EEEEW i am not as sore today as i was yesterday... then apin that I was feeling in my entire leg isnt nealry as bad as yesterday.. its subsiding.. thank god!! though I am quite potsy today.. I think part of it was b/c I took vicodin last night to help the pain and help me sleep.. I took some at like 11pm and about 6 am.. and I crashed on the couch.. as i didnt have the energy to hike up the stairs last night.. that and I ddint want a 2 yrs old kicking me in the groin!! OUCH that would have hurt.. ( my friend was here with me last night and she had her 2 yr. old little boy with her.. not the greatest idea.. as I couldnt really play with him ,, and he kept wanting me to pick him up and i couldnt! ) But I'm not too bad tonight..was able to take a shower.. sitting of course! and that was cool! i felt so much cleaner! thanks all for your support!! it means alot to me!!! dizz

thanks guys!! Well my new wheels were delivered this morning.. instead of last night!! but its all good.. they brought me a demo chair to use.. until my wheelchair comes in that they ordered for me with all the extra little perks to it!! and this one coming will be Blue.. not red..! so that I wont have to go any longer without a wheelchair to use... as my HR are nuts!! well an od ball thing that the wheelchair guy wants.. (though I guess not so odd ball) the wheelchair guy.. wants me to get all my recent carsio's that treat me to please write out a script and letter stating that I truly need this chair.. and need it to be a motor chair (power)...so I have to contact dr. grubb and my local cardio.. to get them to send stuff.. i really dont think that it will be a problem though getting them to back me on this.. as my family doc did.. and PT did w/o a doubt.. though my family doc is getting my dx's aliite off.. saying i have vertigo.. when if fact.. my "vertigo" is not a result of an inner ear problem.. its a result of not enough blood and oxygen to my brain!. SO I'm sure that Dr. G &Dr. B will be more specific! sorry off on a rant there! but yes I;'m very happy to have my chair I actually cried once i got it.. and road around the house in it..my best freind was here.. so she was happy for me too.. as it couldnt have come at a better time! and.. ernie.. if you are ever in PA and wanna race look me up!! or I'll look you up if I' ever in canada! you might win.. my chair sint very fast.. its like 4 miles an hour!! LOL hugs to ya all! dizz

Hi! here is what I am thankful for this year!! 1. I am thankful for this wonderful forum and the person and people who created it and keep it running! 2. all the wonderful people that i have met and talked (posts-phone-email- and in person!) 3. I am thankful for the fact that even though I am sick... that I am not terminally ill... 4.i am thankful for the strength that I find in god and my faith to help keep me "calm" and give me "comfort" "support" and "peace in my sole " 5. I am thankful for my grandma... 6 i am thankful for my new and old freinds who are there for me no matter what.. 7. for bill gates who created the computer 8.. and for the person who invented the internet. 9... oh and my shower chair! 10.. and chocalate!!! MMMM... 11. my salt shaker LOL 12. and my nice new red power wheelchair i got today! 13.for my will to survive and fight even when its hard... 14. I'm thankful for dr. grubb.. as he is a wonderful doc.. and truly showed it x's 1000 this past week... 15. I am thankful that i can still read the books that I so much enjoy and love to do! even if it is only 1 or 2 words at a time.. 16. for amazon.com-- love shoppping online! 17. I am extremely greatful for the few moments that i get here and there that are totally symptom free.. it really is something to hold on too.. 18.I am thankful that I got approved for SSD and that I have insurance to pay for all these meds i am on.. happy thanksgiving to you all!! I hope that you all have a wonderful day.. and i thank god that i have all of you to talk to!! people who get..

Bamagirl... I would have to say I hope that your EP doc is well knowledged and versed in POTS and dysautonomia...as treating pots tachycardia is much different then treating like a rythm tachycardia that is unrelated to pots... I would be cautious of having an ablation done.. ( in my opionion) if the ablation is being done to help your pots related tachycardia...as that can make you feel worse..b/c when apotsy person stand or sits up.. or needs there heart to speed up to compensate for the lack of blood and oxygen to the brain and heart... I dont mean to be negative or scare you.. also I think that it is normal to feel physically ill when you get tachy.. I know that it isnt a good feeling..I hope that you can find a casue for your tachy and a good treatment for ti too! if you have any questions please PM me!! Hugs to ya dizz...

thanks girls!! I am excited too!! and happy as well.. right now I will only be able to use it downstairs. where I am living... as I have no way to get it in and out of the house.. up and down the stairs.. it does come apart.. the heaviest piece is the seat weighing about 30 lbs or so.. and I dont have the strength or energy to lift my 5lbs cat these days.. or carry mypillow upstairs!! that is pathedic!! i am hoping that an apaprtment will open up as well soon.. so that i can us my chair as whenever i need it!! I know that you all understand the odd and weird joys of finally getting a wheelchiar.. as nobody whoi knows me in my life (aside from this forum) understand why i am having such relief and some excitement over my new wheelchiar... I know if anybody gets it.. it will be all of you... I'm happy about it.. yet kinda sad too..b/c the realization of my limitation and how badly my pots has gotten.. kinda is danicing in my face.... But it will be nice to be able to maybe take a trip to the mall.. to do some christmas shoping maybe!! and not passout on the bus.. or only go to one store then have to leave b/c i cant handle the standing and walking.. and maybe even buy myself a new sweater or something pretty to wear!! YEAH!! Ok I rambled there... night folks dizz

hey vanessa Ep stand for Electro physiology===meaning studying the elctricity conduction in your heart... I had a rough time w/ it.. but it doesnt mean tha everybody will.. everybody reacts differently from it... however much it hurt and still hurts some.. I am glad that i had it done.. so that i had things checked out.. and to see if there was anyway that they could treat my really really high tachy rates.. So like i said it depends on the person...I unfortunaltly am a terrible hard person to get IV's into.. and we had to do an alternative option... thanks guys for all the support and well wishes that you have snet my way.... I took a vicodin.. and it is helping my hurting leg.. and making me sleepy.. so of to bed I go!! Hugs to yu all!

Well to all who just read my EP post.. I came home at the right time !! as soon as I walked inthe door this afternnon.. I got a call saying that my wheelchair is being delivered this evening!!!! and one that reclines at that!!! YEAH!!! tha really made my day!!! now all I have to do i sget that darned apartment I;ve ben waiting for... and for the magic cure all pill!! HOORAY FOR ME!!! WAhOOO!!

Hi folks! Oh my I hope I ddint scare people with my EP experiecne!! I really didnt mean too.. Dr. Grubb was great and did his very best to make me comfortable...and pain free. he kept saying that he normally has people sleeping when he inserts the thingys into the (he didnt say thingys.. I just cant think of what they are called!!) the groin..he explained to me what he was doing as he did.. when he was giving shots and meds and what not.. it was kinda funny.. Dr. Grubb goes before the proceddure started " where 's the music?? Pop a CD in!" (to one of the ladys in the room.. and the voted to play the "Dysautonomia" CD.. that is what they called it.. I also most wanted to cry when the first song came on..it was the song by leeAnn Walmack (SSP??) I Hope you dance... and that is one of my all time favorite songs.. and I told Dr. Grubb that too.. he smilled.. good doc that dr. Grubb! The good thing about having the EP done --yes there is a good thing-- that dr. Grubb was able to rule out whatever it was he had to rule out.. ( cant think of tha tright now either! my brain is mushy right now..) ... and it was necessary to have it done.. On the not so cool side.. I dont think I should ahve left toledo this morning!!!! as I was not feeling well at all.. and knew better... I woke up this morning... and I was covered in a nasty rash from head to toe.. all over my face.. neck hands arm back shoulder stomach.. WOW! was I itchie.. so Julie and I were standing there talking and we decided to call the on call doc at like 7:30 this morning.. and I spoe with Dr. Suh.. he wanted me to come in and be seen by dr. grubb this morning or Bev.. as that is an unusaul reaction.. I restisted.. as my bus was scheduled to leave at 8;30 am... boy I am a dumb ash!!!! SO the doc calls me back and says that he thinks that some of the meds they gave me were interacting w/ my regualr everyday meds.. and he told me to take Benadryl for the trip home and then he called in Prendisone to take as soon as I got home... and take till the end iof the week.. and to call right away if I got worse or had more problems... I'm alittle better then this morning.. I'm not a sitchie... and my skin isnt as red and flushed looking... the bus ride was rough.. but i made it...had alot of chest pain.. and tachy... EEEEWWWWWWW I am hoping and praying that this different BB helps me.. and gets these crazy Hr's undercontrol.. I'm going to get on some peoples behinds here locally b/c I am tired of getting the runaround and shoved to the way side and see if I cant get a competent doc! Ok well rant over.. legs are quite sore.. and I really need to take nap.. thtanks guys!! linda

Hi folks! Wanted to pop in real quick and lwt you know i had my EP done oday.... boy oh boy what day! I got taken back to the EP lab holding area.. and they tried 6 times to get an IV into my veins in the hands and all over the arms.. and had no luck.. so thay had to talk to dr. grubb... and he inserted and IV in the groin... OUCH!! OUCH!! cant remebr what he called it though..he sai that he normally does this procedure with patients sleeping...but since we had such problems with IV access.. we had to take an alternate route so to speak... He said he was sorry he had to do it this way.. He gave me a shot to numb it some.. an i didnt feel the initail incision.. but i really felt it when he was going in the right groin area.. and it HURT!! dr. grubb was great though.. had it been anybody else doing the proceddure.. i wouldnt said yeah right and left.! and he went into the left groin too.. that wasnt as bad...they inserted the IV into the groin and finally gave me some "happy juice" as the nurse called it.. i didnt really feel the effects from it.. but the Nurse said that i looked relaxed... SO Dr. g went on with the procedure.. and boy he got my ticker ticking.. let me tell you.. i experienced alot of chest pain and shoulder pain.. and he slow up on the pacing but i felt the pacing and was awake and very aware of what was going on.. was not the most pleasurable thing i have gone through.. Good news is...there is no "short circuits" or extra nerve bundles.. and it is not a rhythm problem causing such high and sustained heart rates... bad news is..Dr. g isnt totally convinced that my HR issues are all pots related.. but cant quite put his finger on what it is yet.. we're missing something somewhere.. but dont know what or where that something is.. Dr. Grubb is great.. very kind and supportive.. and gave me a script for a stronger Beta blocker.. and gave me the choice of staying over noight at the hospital or return to wehere I am staying.. so I am resting at a freinds house now.. she has been great.. and verry helping.. god bless her!! SO i am still in wonderment of what is casuing such rapid HR. as a HR of 240 is not good...and so is Dr. G... I have to go back to see him in about 7-8 wks or so..we also talked about some of my other "problems" as the legs pain.. and he agreed with me that fibro is not going to casue the intensity of pain that i am having.. kinda stumped there too.. I have mixed feeling an emotions about today.. I'm very greatful for dr. grubb and all that he has done and tried will do for me.. and that i didnt have to go through an ablation.. but yet on the other hand I am dssappointed as well.. b/c I was hoping that i could at least geeeeeet my 240 HR undercontrol.. i did not want to here that part of the casue of my HR is b/c of pots.. i am so rapidly deteriorating.. and really just want to be able to enjoy some of life... all right folks i am really hurting right now.. I will be in touch with you once I et home.. love and hugs linda

jan--yes i truly agree w/ you!! thanks!

have you ever had sleep study done?? Asleep stduy can rule out sleep apnea.. it might be a casue for waking up gasping at night.. always good to talk to your doc ... good luck!

YEAH!! congrats!

Oh YES!! i have one of those (actually 2) pillow thingy's!! it was a tremendous help during my last trip to Ohio.. my family dco called in some stuff to help me with nausea and vomiititng as Morning are not my friend.. I've got 2 32 oz. bottles of gatorade ready and some water bottles to as well as peanuts and crackers.. trying to dig out something comfortable to wear for thr trip home.. someone mention sweatpants.. gotta find em'!! and once again I thnak god for Dr. grubb! anfor all of my potsy pals who truly understand!

Hi I have had 4 tilt tables test done in 3 yrs.. all of them support the dx of POTS.. However during on particular TTT they hooked me up to SO mych equipment! ALOT of leads... and this really big defibrillator patch things.. and they placed a cooling thing on to my back..I felt sorta weird.. being hooked to so many machines... I had an IV one in each arm..(so incase of a problem they'd have double access..) and that finger thingy that measure your O2 + the automatic blood presure cuff.. and I was of course strapped in securely... that was a very rough tilt test.. s I got majorly sick on it.. the last one ttt i had done in july was basic... just leads strapped in and IV -bp cuff..

You guys are great! makes me all teary eyed!! I am glad too that Dr. grubb is doing this.. I wouldnt trust anybody but Dr. Grubb to do this..I will be at MCO.. the EP lady told me that if I have no problems during the night that I will be able to leave tuesday... though I am not looking forward to that long bus trip back!! EEEWWWWWW! last month when I went to Ohio I was so very sick the morning i had to leave for OHio.. and the having to sit up right for 6 hours .. YUCK!!!! I will be thinking of you guys Monday!! I'll post aftr I get home and settled and let you know how things went... linda

Hi folks... I'm just dropping a quick line to say hey!..I am leaving bright and early tomorrow morning to go see Dr. grubb to have the EP study done.. w/ the possability of an ablation if he finds the things that he is looking for. I'm nervous to say the least... But I do have total trust in Dr. Grubb and know that he wont do anything that will make me sicker... and that I am very fortunate to have Dr. Grubb doing this and not some other gung ho cardiologist who knows nothing about pots... I'm more so nervous about how my body is going to react to things.. the the actual test.. though that doesnt sound inviting either.. So wish me luck and throw out a prayer or 2 that my body behaves ( hahahahaha thats funny.. my body behave!!) on monday and tuesday.. and that this will help me.. not hurt me!!

WOW! Julie tha is insane!! a shortage of dye.. I have never heard of that.. WEIRD!!!!!!

Hi.. well i find that in combination with IV's that Oxygen does help me feel beter.. I have not been on at home oxygen in a very long time.. and only am given O2 while in the hospital.. or ER.. I do notice a difference in dizziness and visual disturbances... I have spoken with several docs about my Oxygen therory.. and ahve been told that oxygen is not a proven scientic method for treating pots.. or helping lesson the symptoms.. how ever i think that it is worth looking into.. as for me it does offer some relief.. as long as I am hooked up to it..