dizzygirl

Chad Hi I havent experienced the heart beat in my stomach.. but I will get pulses (a heart beat ) through out my body.. I dont know why it ahppens though.. also I get alot of legs pain too..Um.. I have been told that it is partly related to pots/dysautonomia.. the pain I get a a very deepseeded kind of bone pain.. elevating my legs help this.. and also sleep for some reason will relieve the pain.. and keeping warm.. I find that when I am have extremely bad leg pain.. that I am very cold.. but yet at the same time cant handle the weight of the blankets on my legs.. go figure.. you could try taking Tylenol for the pain.. hope you feel better soon Linda

hey there morgan.. I know you've got to be a bundle of nerves.. I am wishing you well during your hospital stay.. and hoping that they can help you.. HUGS Linda

well when i was first diagnosed with POTS.. my cardiologist told me at the time.. that the one good thing is that you dont see alot of 50 yr old women with pots.. and that I will "grow out of it" In my case that is not true..I have since seen the "specailist" inpots who have told me differently... My grandmother is 70 and my mother is 41.. and we belive that they both have pots.. even though they have not been "officially"diagnosed yet..

yeah i second that.. sugar thing..

happy Birthday!! Hope that you have a wonderful day!! and that your new yr is full of good stuff and recovery!! You are so brave.. eating radioactive oatmeal!! OMG!! I would have puked my guts out..

Hi... yeah I have "heard to" that gatorade is bad for you (cant remeber why though) that is all I drink is gatorade and water.. I cant imagine not being able to drink my gatorade!!

Corina... congrats on geting your SSDI.. that is wonderful! your hard work paid off.. I can sympathize with your feelings of sadness about work.. maybe there is something brightere and better ahead in your future... HUGS Linda

Melly.. OMG!! I so sorry for what you have endured.. and what you friend went through too.. that is just terrible!! It makes me want to cry... please hang in there! and I hope that you find a doc to help you and your son soon..

Melly Hi I wasnt exactly sure which one to pick..I have been told that I have major depression and PTSD (which in my case is true) but recieve "theraphy" for these and have done well.. but since I was given these diagnosises when I was 15.. they stuck.. and every doctor I saw said well all your problems are psychological.. I'm like no there not..WHATEVER!!! and that everything I had been experiencing was all in my head..yeah being in the ER with 191 HR rate is in my head.. Anyways i think that my favorite diagnosis.. has to be that I am a manic depressive Bipolar!!! Any one who really knows me.. know that that is just obserd!! I still get the "mental health diagnosis" thrown in my face since every once in a while.. when dealing with a ding dong of a doc.. But in the past 3yrs..4 cardiologist/EP docs have confirmed that I indeed have pots..I feel VALIDATED!!! 2 of those doc being Dr. Grubb and DR. Fouad.. so.. i wasnt sure which one to pick.. But yes they fed me tons of antidepressant meds as well as psych neds.. and OMG!! they made me gain a great deal of weight!! good luck..

Hi.. for me that is a tough question to answer!! If I dont eat something on the average of every 2-3 hours during waking hours. I feel really sick.. nausea..lightheaded. what not..(but I am also a diabetic..) weak.. but on the flip sid eof that.. if I dont watch what I eat or eat more then I should at one time..I get nausea..vomitting..stomach pain.. and very bloated and what not.. if I eat a regualr meal in the afternoon or evening I tend to feel sick afterwards.. I found that if I just munch during the day.(pudding..cheese..crackers w/ peanut butter.. pickles olives.. maybe some toast and scrambled eggs..) that i am ok.. and that the best time of day for me to eat is about 10-11pm.. which is actually the worst time that you could eat!! and a meal generally isnt very big for me..i can get filled up quite quickly one a few bites of chicken and a few bites of whatever is with it.. But that is when I am most functional.. and for some reason that is about the only time I can eat a real meal wihtout it effecting me badly like it does during the day.. and I drink alot of water and gatorade during the day too..

YIPPEE!!! I am so very glad that you got your approval letter!! Happy wheeling to you! Linda

Miriam.. I will be thinking fo you tomorrow and hoping for a good outcome for you!! good Luck Linda

Hey folks.. I have been meaning to post about this now for a few days.. but figured that I had better wait till I wasnt feeling so angry about!! Well on thursdayi went and seen the GI doc finally.. I have been waiting over 2 months to get in.. Well as you all know I have been having a great deal of GI "distress" (that is an understatement!! pain is more likely word!!).. and I was finaly able to get into to see this guy.. well he was very Uh.. whats the word..abrupt.. rude..insensitive..narrow minded..JERK!!! I was trying to tell him everything that has been going on with regards to the tummy.. and he kept cutting me off and interrupting me!! I would start talking and he would stop me or like I said interupt me an dflat out not listen to me.. So I got like as far as telling him that I have diarrhea and severe stomach pain.. and he stopped me..I never did get to tell him about theall the other lovely things going on with my "insides" (i.e--severe nausea.. fevers..chills..violent puking.. on more!!) He was just a big JERK!! the only reson he found out of the bleeding is because he asked.... then he concluded that he wants to do a colonoscopy.. I told him that I have POTS.. he did not know what that was. (that is no surpirise) so I tried to tell him and he actually gave me the hand!! he put his hand up to stop me from talking! I wanted to talk to about about my concerns about having this test done.. since i have pots.. and my BP does bottom out on pain medication..and that that combined with possible dehydration.. is not going to create a pretty picture.. trust me I am speaking from experience! I wanted to know if I was going to recieve IV antibiotics before the proceddure.. due to a past heart surgery.. and if I was going to recieve IV fluid during before and after the test.. and ya know if anybody there assisting.. has any idea on how to deal with a potsy patient.. I know that you all know that our bodies can react crazy to things.. and I really do not want a repeat of JUne's episode with regards to pain meds.. I havent been right since! So this is where I am at now.. I have drop and email w/cardio.. and am scheduled to see Dr. grubb next month.. so I want to talk with them both before I have this.. and I am going to call my PCP tomorrow and get a referral to antoher GI doc.. I am just really not to keen on having this done 1. with a doc who was so very RUDE! and uncaring to me and 2. with no medical provider around with a lick of knowldge on pots..3.. the DUDE would not let me voice my concerns with testing.. and m other health issues.. So He is FIRED!!! But thank you for letting me vent this all out.. and i still would appreciate any input in regards to the colonoscopy.. i dont think that there is any way around this.. not with what is going on.. thanks guys!! sending big Hugg"s your way! Linda

Hi guys thank you so much for you footie advice.. its a big help.. now I have some idea of what kind of stuff to get to be well prepared!! Steph.. nope in this end of things it seems as though we have winter weather for 9 months out of the year!!! no spring no fall.. just winter and summer..!! LOL No really I am starting to have a problem keeping my tootsie toes warm.. I have had to resort to wearing sock in the summer time!! YUCK!! Its summer your fet should be able to breath... LOL thanks again!

I am wondering..Winter time is fast approaching.. here in my corner of the world..it can start snowing as early as October..gotta love living on lake erie.. and dealing with those lake effects snow storms! Well what I am wondering.. is how do you guy keep your tootsie warm in the winter!!?? For that past couple of winters I have really struggled to kep my feet warm.. I have too take the bu every where I go.. and that requires some standing time outside in the nasty wheather.. from anywheres to 10-mins to an hour! or longer.. depending on the wheather..)and my feet get cold so quick.. like cold to the point that they hurt..ever though I am wearing compression hose.. 2 pairs of regular socks.. and a pair of thick wool socks.. my feet still get so cold.. So what I am wondering is if you guys have any recommendation for a good pair of winter boots.. that have tread.. and can be waterproofed.. and most of all are warm!! My feet usually are cold.. but the winter time makes it so much more worse.. my feet never warm up... Nina I hope that this isnt too off topic.. I apologize in advance if it is!! I figured that i would go to you guys.. I know alot of your deal with "cold feet".. and thought you might have some ideas! thanks Linda

Nina.. so sorry that you crashed so hard w/PoTS.. that really *****!! I hope that you start feeling better soon.. and arent in pain and feeling so potsy.. You give so much of your self to other people Nina.. and so much to all of us here on the forum..Please REMEMBER to take care of yourself.. and slow down a bit if you need too.. take care HUGS Linda

Hi jennifer I know exactly what you are talking about..feeling like you are drugged! I believe that it is related to POTS.. I find that if I wake up feeling like this.. that it is just best to go back to bed and "sleep it off".. if I am able too.. I have also found that if I try and fight it.. and just go about my daily grind.. that that "feeling" will get worse.. and I will start to feel worse.. and the likely hood of me having a syncope episode during this time.. if I force myself to get going.. is very likely.. I unfortunately do not know what causes it.. it could be lack of blood flow.. low BP.. but i believe that its Pots related.. good luck linda

Hi Julie.. sorry that you are feeling so cruddy.. that *****.. I wanted to mention that I too get the "shaking" from the inside out.. where I just shake uncontrollably.. I will do this when my body is under some kind of stress.. High HR.. pre..during..after syncope.. Low BP.. or if it is too hot for me or I stand too long.. Just a bunch of things that I have Noticed that are going on when I get the shakes.. there really isnt a whole lot that I have found that relieve this symptom.. you just kinda gotta ride it out.. when my body isnt so stressed.. the shaking subsiides.. laying down does help alittle too by the way.. I know not the most ideal answer.. I am glad that you have gotten into the cleveland clinic to be seen.. maybe they will be able to shed some light on to things and help you.. I hope that you start feeling better soon Linda

Bella--Julie_karyn.. I too can not "lay int he sun" I cant stand going from my AC bedroom out to the hall wall.. my room is the only room with AC in it.. and that heat literally smacks me in the face.. and instantly makes me feel sick.. YUCKY! I can remember being about 11-12 yrs old.. and it would be stiffling hot and humid outside.. and I would have to go outside.. and the rest of my family would be siting there running around sweating there rumps off.. enjoying the hot weather.. snd there I would be sitting in a lawn chair in the shade,, freeazing cold.. in my favorite purple sweat pants... and not have a drop of sweat on me.. my parents used to tell me that I make them feel hot just looking at me in my sweats.. in 90-100 degree weather!! My dad used to tell me that I wastn normal becasue I never would sweat..at this time we had no idea that I had POTS.. or even that POTs existed.. they dont tease me now.. instead they hand me water and gatorade.. LOL Linda

Hi welcome!! it is nice to see a hubby and father on board trying to learn about his familys illness.. great that you want to learn more.. It you havent allready to the forum main page.. www.potsplace.com (DINET.Org) there is SOOO much info on there for you to read.. again welcome!

OMG!! my lord that has to be the most pathedic off I have ever heard of in my life!! your right that is a crock!!! Acrock of BS!!!! Well you stick to your guns and keep fighting.. you deserve all the money that you are able to get.. good lcuk

Oh nina!! wow.. so glad that you got some well needed slepp.. but so sorry that your A broke! that freakin' is not cool!!

hey yeah I seem to get really tired out around 2-3pm and like9pm and need to lay down and take a nap.. and yes..I often walk like a drunk person.. especially early hours of the morning.. or if I am getting ready to pass out..

WOW! EM. that is really interesting.. thank you so much for sharing that with us.. I would love more info on it.. Linda

On Nina that really is an OUCHIE!! I am so sorry.. I do hope that your toe starts feling better soon!! please take care! Linda