cardiactec

i didnt last long on clonidine. zonked me out and i had hallucinations on it. hope your experience is better than mine and that it begins to help you! (but it sounds like so far your body doenst like it as much as i mine didnt!)

hey maggs, haha, that is cute "POTS-hole". funny but not. i totally understand where you are coming from. today i was just sitting doing nothing and my heart was going CRAZY, beating fast and i had that shortness of breath, cant breathe right feeling . hate it. hmmm, to change over from your atenolol 50 mg's, you'd probably have to ween down to 25 for two weeks or so but definitely check in with your cardio. not sure what is best for weening down off of beta, just know that if you dont do it the right way it can actually cause the tachy to be worse and send your BP through the roof. take care and feel better!! let me know how it goes if your cardio switched you to toprol xl.

have you tried metoprolol (toprol xl) ? it is extended release and might work better for you..........is the beta not keeping your rates down?

seems like there's a lot of people on pretty low doses of beta. are any of you taking more than say 50mg's of any type of beta a day? i am wondering why i am on such a large dose compared to most of you (or at least what i have seen for dosage amounts that some of you are taking). i am on 160 mg's of beta (sotalol) a day.

hey kel, that is a very low dose of lopressor. it may take some getting used to but if you feel that you are endangering yourself by taking it, i would call your doc. Feel better! p.s. i'd question the reasoning for being on the levsin.

wow! sounds yummy!! i'm going to try that next time i have artichokes!!! thanks for the idea!

hey jacquie, you are right. dr.gibbons from beth israel told me that there's probably a bunch of people walking the streets with POTS/dysauto. but that they might not be so symptomatic to seek out a doc about it and that some even may think that their "symptoms" are normal. hey, for awhile i thought it was normal for your heart rate to be 190 after getting out of the shower and feel shaky....i learned that 190 was a CRAZY heart rate when i got into the medical field. a lot of people think that what they feel is just a normal, daily part of life because perhaps that is all they have ever felt/known! ..........so yeah, gibbons is right, there's probably a lot of people out there with POTS/dysauto that havent been diagnoed either because of ignorance of docs in believing there IS such a condition or because people think it is normal to feel what they feel cuz they have felt that way as long as they can remember (or maybe they dont think it's normal, but they have learned strategies to "get around" how they feel physically...........

oh yeah, by the way, there are some docs investigating an actual connection with MVP to physically cause tachy.......and not just be secondary to dysautonomia. i know that MVP doesnt cause autonomic imbalance, and for some reasons of which no one can really understand, in many people both MVP and dysautonomia are found (MVPS).........but there is actually investigation of the prolapsing valve to PHYSIOLOGICALLY trigger or cause sinus tachycardia, but not necessarily the other symptoms a dysautonomic feels......

anyone here like artichokes (not the ones out of the can, the green leaf and all!). if you eat them whole, do you know of any good ways to cook them. i just had one the other day with sea salt and sprinkled molasses. it was SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO good!!!!!!!!!!!!

how does the cold effect you? ya know, i couldnt believe the other day, i was sitting in church with my parents and it was literally like 100 degrees in there (no A.C.) and my feet and lower legs were like ice cubes!! my mom was so hot and so i put my foot on her leg and she couldnt believe how cold i was! it's weird, i think i deal better with the summer cuz i am just way too cold in the winter! but interestingly, my pulse is A LOT better during winter time and in the summer it's CRAZY. i guess for my heart rate really doesnt have to do with how i feel. it can be fast in the summer and i will do okay, but symptomatically i can be worse in the winter and my pulse will be essentially normal.

UnicornIsis, isnt that completely and utterly RIDICULOUS that even when there is an actual DIAGNOSTIC IMAGE that sits before a doc, that they can SEE with their very OWN TWO EYES of a FLOPPY, PROLAPSING valve, that they still disregard it and the symptoms (MVPS) that goes along with it with some people?!?!? some docs have a hard time confirming a diagnosis, but geez, when the image stands point blank right in front of you, ya think they'd be smart enough to believe what they see! it's crazy to think that WE are the ones that are supposedly nutty when there is an actual structural abnormality (whether or not MVP is "common" and "nothing to be worried about") that is seen diagnostically that they deny or INTENTIONALLY overlook. funny that a kidney stone may or may not cause someone pain, but yet it is there/IT PHYSICALLY EXISTS/ PATHOLOGICALLY to the naked eye and docs believe it may or may not inferfere or cause an issue in someones life, and thus will keep an eye on it, check in with the patient, treat it, etc, etc............but NO NO NO, mitral valve prolapse is only a young women's hypochondriac pyschiatric issue that they all love to whine and complain about. heart valves arent supposed to prolapse, just like kidney's arent supposed to have stones, but for some reason MVP cannot cause symptoms and a kidney stone can. THEN there are some that would evaluate the size of the stone and determine whether or not the patient SHOULD be symptomatic from it. just like MVP, to what degree is it prolapsing, mild moderate severe? and some would write off the people with symptoms who have only a mild degree of prolapse, when in all reality the degree of the prolapse doesnt necessarily matter as to how SYMPTOMATIC you would or wouldnt be. sad sad sad. MVPS is for real. dont let docs discourage you. there are some that dont even believe what they see and some that ONLY believe what they see. ye of little faith. dysautonomia is for real. thank God there are some docs that realize this and can try and understand where we all are coming from.

Hello all! now i know that the summer can cause pots symptoms to act up more because the hot weather causes more vasodilation which in turn causes the heart rates to creep up even more. BUT anyone notice a dramatic reduction, (even with or without a reduction in symptoms) in heart rate during the winter when it is colder outside?

hi there, are you on any meds to help control your rates? lying down didnt help? sorry for the bad experience in the ED. dont let it stop you from going back if you ever need to. you need to take care of yourself, whether or not people write off POTS by throwing you in a back room. very sad that people, especially those in the medical field, would be like that. ignorance is bliss to them, must be nice.

i dont i have anxiety. i was just curious because it seems like a lot of people who pots here have anxiety written on their signature, so i was curious if the anxiety was linked to position change (not true anxiety) or if people had true anxiety (which i then would hesitate in diagnosing someone with POTS, or if i was a psychologist would consider a psychological problem more so than a physiological problem).....but once again, some people think there's an overlap, so i am not really one to say what is "True" or "untrue" and what may or may not be related or unrelated to POTS symptoms.....

there seems to be a lot of people with anxiety who also have the diagnosis of POTS. now i know that anxiety can be a symptom of pots due to prolonged standing or just upright position, but all of you who have been diagnosed with POTS, is your anxiety posturally related or are you just "anxious". i mean i guess i could see why psychologists would think panic/psychosomatic/etc because anxiety could both be either a symptom of POTS (meaning occuring while upright cuz of the abnormal surge in catecholamine from auto dys) or just flat out anxiety whether lying down, standing up (meaning not posturally related) . low gave me some handouts when i was out at mayo that said that there is an overlap btwn anxiety and POTS.........so i guess the question is, you who have anxiety, is it posture related or do you always "feel" anxious?

thanks for the replies. i am always doubting the pots diagnosis cuz i always hear people complain of dizziness or passing out....and the mayo video clip explained that although pots has many different symptoms, the number one symptom is dizziness - then the girl with pots goes on to explain that sometimes she feels nauseous, sometimes fatigue, but that no matter what she is always dizzy. i really didnt like that video all that much because POTS patients arent just btwn 12-20 and heart rate arent just 110-"or even 120" as the woman in the clip so emphatically exclaims. my rates are A LOT higher than 120!! thanks for the references though. it is nice to know where to look for info!!

everyone keeps telling me that dizziness is the PRIMARY feature of POTS. so if you dont get dizzy, does that mean you dont have POTS?

hey there. i will be tested with a GI motility exam next week for gastroparesis. i had a EGD a month ago which showed bilious fluid in the stomach after a 12 hour fast, so now the doc thinks my nausea/stomach burning is from paresis.......the wierd thing is is that sometimes i will feel completely stuffed after eating only small amounts, then other times i will eat and feel starved to death. do you always get the "full" feeling with gastroparesis or does it fluctuate with the "empty stomach" feeling....i too wake up like some of you in the middle of the night SEVERELY nauseous, and sometimes with my stomach feeling FULL FULL FULL and other times with my stomach feeling so empty.........

hi there, i did actually go in to my primary's office today. was going to put it off until i started in with the fever last night which has been waxing and waning all day. last night my temp was 101. this am in the docs office only 99.4 and now is 100.....i feel pretty aweful. they did an ekg in the office and must have messed it up or something cuz they want me back in the office tomorrow for another ekg.......anyway, the one they did today didnt show any changes from my previous ekg's........i seriously thought i had pericarditis or something cuz it feels like a friction rub in the middle of my chest.....the doc didnt order any bloodwork and no chest x-ray. i wasnt impressed. he just listed to the lungs and said they sounded clear.......so i guess that is why he didnt order a chest x-ray.......but he still should have done some bloodwork! i just know it's not costochondritis.....i havent had a fever in about 5 years......so this is way off for me.... funny you mention pleurisy. that is kinda what i was thinking. either that or pericarditis - but with pericarditis, nothing is showing on the ekg.......my mom's mom had pleurisy a lot due to lupus... did they diagnose your pneumonia by just auscultation or did you have an actual chest x-ray to diagnose that...? thanks AJVDK, i guess i'll just keep pounding the fluids and hopefully the pain/fever will go away that way since nobody else has a better idea for this....................the primary doc wanted to send me in to some D.O. on friday for "manipulation" on the "costochondritis". i passed on that! i told him i really didnt believe it was costochondritis because i have a fever with the pain! argh. PLUS, i never heard of anyone doing manipulation for costochondritis??

hey all, i would have to say that i am a bit discouraged. for the past week i have been having severe intermittant chest pains and yesterday i started in with a fever of 101. i went to my primary care today and he said it's just costochondritis........? anyone heard of PULLED MUSCLES causing a fever of 101??? i havent.....hmmm....so i checked in with the cardio, just to let him know that i had seen my primary care for the pain/fever....since my cardio was out on vaca, another cardio called me (just called me) and said it doesnt sound cardiac........frustrating. is there like a viral thing going around or something?? argh, how frustrating....i am sure cardios get sick and tired of hearing 24 year olds call the office with "Chest pain"......cuz nobody ever thinks it's anything relating to heart if you are so young. either that or everything stems from the POTS.........what do you all do for chest pain? do you take any med? so so frustrated.

do any of you have a lot of hyperpigmentation circles (like brown colored) around your eyes? someone told me that this could be related to a connective tissue thing? ever heard of it?

funny you mentioned the two week thing with the meds. when i emailed the coordinator of the research, she said that he wanted me off beta blocker for two weeks prior to me being studied. i thought that dr. stewart meant like stop all my meds for two weeks, but what he really meant was to ween myself slowly off beta for two weeks - so i'd still be on the beta, but slowly tapering down the dose for two weeks. he wants me off everything starting two days before testing. so really i would only be off beta for two days, not two weeks. i dont know if that is what you thought he meant or not. but just to clarify. i wasnt going to do the study as well, cuz i didnt think two weeks being off beta was a good idea. but it's really only two days COMPLETELY off beta/meds....

hey funny you should write this. the past 3 days i have had severe chest pain.....and have just woke up with it again....it was so bad saturday i actually did an ekg on myself (i work in cardiology).....ekg looked okay.....i am wondering if it's the heat/humidity that does it to us?? you should go get evaluated by the E.D.

hey, ever tried seabands? not the motion sickness tabs you put behind your ears but the actual bands you put on your wrists? those things i used to wear ALL THE TIME when i had nausea SEVERELY (thankfully mine is a little better).......they seemed to help me some.....along with peppermint.....another thing that helped calm the nausea were ice packs behind the neck or on the wrists..... hope you feel better....

hey jacquie! mind if i write to you too?? the more pen pals for all, the better!