dizzygirl

well with and without a BB my HR is out of sight.. ranging anywhere from 120-240.. now that I am on a higher BB dose my HR average is between 110-120 all day.. and shoots up there some to about 144.. I honestly wouldnt want to try and not be on my BB's. for fear of how much higher my HR will get.. tha is a scary thought for me!! Oh and thirst.. well I am always thisty.. but I am more thisty in the midle of the night. i keep a couple of botle of water and gatorade on the night stand to drink.. there are bad potsy days though were no matter how much i drink.. i can never get enough.. never quench tht thirst...

Sophia.. when I had my stress echo 3-4 yrs back.. they still did the inclining thing...which ***** by the way!

hi...I get alot of very cold feet and a colf nose... but i also am very very heat intolerant..even with the heat from the stove top cooking.. and if somebody is standing to clsoe to me and is breathing in my face.. the heat of there breath makes me feel sick..I hope that i dont sound crazy by what I just said.. also my body temp is usually about 95.4.. and if my temp goes higher the that I am running a fever.. try explaining that to a doc who say normal body temp is 98.6.. well doc.. I'm not normal!! my ans is all wacky! but yes I wear multiple layers of socks.. and my feet still are cold! you R not alone!!

hey wow this is my first time sending a message on the new and improve board! it looks good! But jan.. i'm proud of you! you made it through the nasty stress test!! I am amazed that you went for 8 minutes! Wow in 2001 or was it 2002?? well anyways.. when i had my stress test done w/ pics..echostress test.. they said you have to go 2 minutes or until you heart reaches 200.. well my heart rate reached 200bpm in under a minute.. and i thought that I was going to die!! OH i felt so horrible and couldnt breath!.. this was done before i got diagnosed with pots.. they were trying ti figure out why i ended up in the ER at 1am with a HR of 191.. what a day that was! proud of you Jan!!! i just cant imagine going to 8 minutes on a treadmill! you go girl! Linda

Hey there.. it is after 3 am here in my little corner of cyber space.. and I was thinking.. what can I do personally to help raise awareness of dysautonomia?? And how can I get envovled in the stuf that is allready in the works to raise awareness??? Michelle or Nina.. any pointers?? my brain is on full speed tonight.. and I got to thinking about pots.. and all the people on here who suffer from this..(not to mention all the people out thre who are suffering b/c they cant get a doc to take them seriously!) and how some get treat poorly wheather it be by family..employers. co-workers,friends,, and as sad as this is the medical community.. SO I'd like to know what I can do to help make a difference.. what about distributing flyers to dr.'s offices?? and hopsitals in the town you live in and towns around you.. can make em and print them up off the computer... I dont know forgive me I f iam not making anysense... as it is 3 am.. and I wish i were sleeping!! dizzygirl

YeAH!! way to go girl!! That is very cool.. and wonderful to hear.. its victories like that that keep the spirit going!! And you got "free presents too!!"" that is double the fun. and worht the trip!! I am am glad that you were able to enjoy some normalness tonight.. YIPPEE !!!!

hi my old doc retired about 5-6 yrs back.. but I'm sure the records would be around somewhere if i asked for them.. would be interesting to see what they say anyways... maybe I could pinpoint a start of really definning symptoms.. and see how far back in my medical records that I have had these potsy symptoms.. that were never taken seriously!! HMMMMMM

You are not a whiner!! OK.. get that thought out of your head my dear!! Living w/ constant dizziness and other invisible chronic illnesses (such as pots) is hard.. and alot of symptoms do over lap with other problems and/or disorders.. If you are having a hard time working a full day.. can you cut down to part time.. maybe w/ hours that will best work for you?? I realize that having an understanding employer and also depending on the work that you do.. that that may be hard to do.. But keep the lines of communication open.. I would say be upfront with them.. tell them you want to keep working.. but need some accomodations... i also realize that financially that may be hard also.. I see that you are going to Beth isreal..my friend lives in North Attleboro.. and she wanted me to get into see a cardiologist through there.. but I am a long ways away from Boston! Will your neuro back you up in filling for disability?? Meaning will he fill out the necessary paper work w/ o making things more hard for you?? Oh you mention that you have ear problems.. have you tried antivert for the ear related dizziness? I hope that you start feeling better soon.. and can make head or tails of things.. and again you are not a whiner!! we DO understadn with what you are going through! hang in there!!

Hiya Morganzilla!! I dont get the humming in my legs like you described.. but I DO get huming in my head... right behind my ears.. and it is like there is a line from ear to ear of electricity buzzing through my head...sometimes it does sound as though there is a swarm of bee's in my head.. i can relieve the humming "bee's" in my head by putting my head down or laying down.. I'm glad that you posted about your humming kazooo.. I have only ever mentioned the humming to a doc once.. about 9 months before I got diagnosed w/ pots.. I remeber says to the doc.. "its like there is electricity running through my head.. do you understand what I am trying to tell you??"" He of course said no.. I have never heard of such a thing!.. and told me to contact a psychiatrist for mental health... Geezz..

Hi all I am wondring.. a few weeks ago I had a chest x-ray done.. and it showed the I have to ribs fused together.. and the ER doc felt that that could be a contributing factor (one of many) to some things that are going on... However.. I cannot recall ever having been told that i have fused ribs.. and my mom never told me of this either.. as you think she would know.. she is the momma!! I asked her that if during my heart surgery when i was little if they could have fused my ribs.. and she said that they never told her .. thayt they just separated the ribs.. however I do have some nutty birthdefects so to speak.. in the way that my ribs and chest bones grew... so my mom is thinking that I was just born this way.. anyways I found it to be kinda weird.. so I thought that I would ask all of you what you thought... My question being.. can you be born w/ bone fusions? thanks for listening!! dizz

I can add a "me too".. I can not rememebr not having some kind of bone/joint/ or muscular pain.. Now if there were a magic pill to take away the mysterious pain.. along with the pots.. that would be great!!

I pretty much stay in the dark during the day.. even sunlight and regular lights bother me.. and during the day and at night when I am trying to sleep.. I cant stand noise.. as it send jolts of pain through my head.. and my eyes are just to sensitive to lights... I wear sunglasses yr round..even on cluody days.. when the sun isnt out..

Hi.. My weight is like a yoyo.. in 2002 when i got diagnosed I was on some meds (florinef i think) and I gained like 25 pounds in short order.. but then lost it w/o any effort really... and I maintained my weight.. then this past spring and summer my pots got/ and is very bad and I have gained like 36 pounds... but now.. I am to he point were I cannnot really eat.. as I throw it up, or get diarrhea. or food and liguids cause sever tummy pain.. and the nausea.. is awful!!.. But in the course of 5 days maybe I have lost like almost 6 pounds.. and am curious to see tomorrow how much more I have lost.. due to this potsy/gi crap... Sorry I am not much help here.. thought I'd share...

WOW! I hope that you start feeling better soon and recover from the potsy crash... take things slow HUGS LInda

Hi folks.. just wanted to pop in real quick... I spent most of today in bed too.. good thing the cramps in my thighs and cafs (SP?? sorry cant think of how to spell that!!) arent as bad as yesterday.. But the ones in my feet and toes.. are killer... I ended up taking vicodin through out the night. which helped with the pain.. but made me feel very wacked out.. and very potsy.. I figured that I would give it one more day (today) and see how things go.. and if I am still having problmes tomorrow.. I will definatley go to the doc... thanks guys dizzygirl

hey emily.. thats a good idea!!!!!! I never thought of a lower dose between 30-60mg... I know that I am suppose to be starting this med Provigil.. but I am nervos about starting new meds.. as my body reacts like a looney toon! I hope that you start feeling better!! and that you too get some much needed good quality sleep.. HUgs Linda

Hi emily.. glad that you made it to the lyme doc.. but sorry that you are feeling so icky.. Cymbalta.. hmm.. I just started taking it at the end of september.. I have found that it does help me some with leg pain.. and I do sleep sorta with it.. and my autonomic/adrenaline surges are as bad at night... However.. my first couple of days on it werent all that great.. alot of nausea, bad fatigue, funny feeling in my chest.. I no longer get the funny feeling in my chest.. but the fatigue is still there.. so is the nausea.. some days after taking cymbalta it is more severe then others.. and some days its not so bad.. But everyday about an hour or so after taking cymbalta.. I am out like light! It makes me very sleepy.. and I generally sleep from 3-8 in the afternoon/evening.. I take the Cymbalta at about 2pm.. after I eat something.. I started out on the 30 mg daily.. now it as been bumped up to 60 mg daily.. but I am sitting on the perscription.. as i hate to increase meds doses.. it scares me!!! LOL I hope that it does help you.. it has helped me.. and I know that this may sound weird.. but its hard to explain how it is helping.. just that i know that it is.. no matter how small that it may be.. does that make sense? hang in there Emily!! Linda

hi.. no I didnt check my BP... moving wasnt real easy to do today.. I had thought this afternoon to call my PCP.. but didnt.. though calling the on call doc isnt a bad idea for tonight.. as the cramps are returning.. Ok folks I am going back to bed..must sleeppp...

Hi alll... I am gong to try and make this short and sweet... (LOL).. i started getting wickedly bad "charlie horses" (cramps) in my feet and legs at about 2am last night.. and let me tell ya they weren't the quick cramps.. they lasted all NIGHT!! well into late this afternoon... I tired to sleep.. but kept getting woken up with this crampy legs feet stuff... then on top of all that it was a bad potsy kinda day.. I tried getting up around 2 this afternon.. and couldnt stand I was SO freggin' dizzy.. and nausous!.. and was getting a potsy headache... as once I did stand all this pressure went straight to the top of my head.. and made it feel like it was going to blow up.... so i made my way to the couch.. though how I dont know there was a cramp in my leg right above the back of my knee... that lasted hours! AARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGGGGG!!!!!!!!!!!!!!!!!!!!!!!!! but I was ablw to fall asleep for about 5 hours and.. that crazy cramp in the back of my knee is gone.. thank GOD! I am still having them in the arches of my feet and in my big toes...I woke up this evening very tachy... and w/ blurry cruddy vision.. and the even lasting internal body shakes.... sorry folks I just needed to vent....UGH i hate feeling like this.... adizzycharliehorse

thanks all for the support...! Jill.. I had to laugh at your comment about shopping and feeling the material that the clothes are made out of!! I do the exact same thing!! I will spot something that I like.. and then reach for an arm or a leg and if the material is rough or heavy.. and doesnt breath.. then its out! I'm having one of those days to day where I dont even want to touch the hair on my head.. as it feels like by brushing it that i am going to pull my eyeballs up through the roots of my hair!! LOL.. sorry.. GEna.. one thing that does help me.. and forgive me as I dont remeber the proper names for what is and what thingy is.. but.. I had a great PT.. who when i couldnt stand for my head or shoulder to be touches.. or pressure.. he would use this ultra sound like thing.. where you use this wand (SP???) then send ultra sound waveslike deep into the muscles.. and is supose to help relax them.. AHHH!! I loved that wand thingy!! and moist heat helps.. but most of the time the moist heat packs wil make me feel very panicked..(i know sounds weird..) what I mean is.. the heat laying on your back.. and espacially the collar bone or breast bone.. oh my god.. I hate that.. it makes me feel like I am going to pass out!! but anywasy wanted to say thanls to you all! HUGS linda

Yeah Carmen!! that is great.. I am so happy for you and your family!! great news.. its so great to hear of good days from everybody.. its a real mood lifter!! BIG HUGS! LInda

Hi welcome to our potsy world!! you will find some wonderfully supportive people here... I understadn what you are going through ... I am 23... and was officially diagnosed with POTS when I was 21.. and have had pots since forever... have you tried Cymbalta or mestinon yet?? I take both of these.. and they do help..there are many beta blockers that you can try.. you could ask to be started at a very low dose of a BB (beta blocker) and work your way up as you need too to the best dose for you.. see what doseage works best for you... also I want to mention.. I agree with Morgan on the family thing...It is so hard for family to 'get it' and accept it too.. You are NOT being lazy.. please do not think that you are... It has taken my father a long time to even begin to accept that I have pots.. and that there definately is something wrong with me that I am not making it up.. I have several well Known Cardiologist in the country backing me up that I have very bad pots... and what really hit home the fact that yes, there is something wrong.. was when I called my parents early one morning from my home.. asking them to take me to the ER..b/c I couldnt stop pasing out.. and had spent literally 2-3 days on the couch.. and seeing me so white and pale.. then turn blue when I tried to walk... I really hope that you start to feel better.. and find some meds that will help you.. its kind of a hit and miss w/ meds and doseages.. hugs to you Linda

Oh my!! everybody is getting sick!! I hope that you feel better before your flight... Melissa... we are getting some nasty weather here in Erie too!! It is SSSSOOOOOOOO freggin'windy.. and just pouring outside!! YUCK!!!!!!!! Lauren good luck with your flight.. and hope that you can enjoy yourself some while you are there... hugs to ya girl.... linda

I hope that you feel better soon Linda

YIPPEE!! Persephone.. I am so glad that you are feeling better tonight.. I know things have been incredibly hard for you...its nice to see that you are doing allright tonight!! You go girl on your essay!! Hugs to ya Linda