Guest veryblue Posted May 3, 2004 Report Share Posted May 3, 2004 Hello...I was wondering if any of you guys also have a fast heart rate when laying down as well as when upright? I know my poor ticker pounds away all day and all night long...laying down, standing up, dancing, showering...it never slows without the help of a beta blocker. Would I have POTS even if t is fast laying down? I am under the impression that with POTS your fast heart rate is due to veins in your legs that dont compensate to the gravatational stress of the upright posisition...why would ones heart be beating fast sitting of laying if that is the case. Also the hair on my legs seems not to be growing as fast as it used to. Is this from the POTS? Also my case (which still is undiagonsed at the time) seems to be mild...I still exercise, drive, stay up all night and go to school ealry in the morning, and stand up all day long with no problem. (My BP runs low however...112/75 without a beta blocker and as low as 95/60 with one) Does that mean that I have a better chance of it going away? Sorry for all the ?s but I'm scared...this just hit me overnight one day with no warning. Thanks! Quote Link to comment Share on other sites More sharing options...
Merrill Posted May 3, 2004 Report Share Posted May 3, 2004 Sorry you're veryblue! You may want to spend some time learning about the differences between POTS and Inappropriate Sinus Tachycardia on this and other web sites and/or at the library. (You could even read some of the questions and answers that go back more than 30 days on this site--around the first of April, Thisblows came to us looking for answers, and it appeared that she suffered from IST and not POTS because her heart rate didn't go down during the night or while lying down.)If you haven't done so already, you may want to seek the advice of a cardiologist, who can run a number of painless tests to see what's going on. Wearing a 24-hour holter monitor will show whether your heart rate decreases when you're sleeping (typically the case for pots people, but NOT the case for people with IST). A tilt-table test will show what happens to your heart rate when you go from lying down to typically a 70 degree angle. Pots is usually the diagnosis if it's 30 beats per minute or higher in the first minute. (They watch your blood pressure too, but people with pots do not all have high or low blood pressure... )good luck,m Quote Link to comment Share on other sites More sharing options...
Reputta Posted May 3, 2004 Report Share Posted May 3, 2004 You may want to have your thyroid checked also. When I had an overactive thyroid, my heart pounded all the time. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 4, 2004 Report Share Posted May 4, 2004 Welcome to our forum. I believe this link will take you to the posting mentioned by Merrill...http://dinet.ipbhost.com/index.php?showtopic=421There are links within some of the responses as you skim down the page that you may find useful in figuring out the supine tachy issue.Nina Quote Link to comment Share on other sites More sharing options...
morgan617 Posted May 5, 2004 Report Share Posted May 5, 2004 if you see a cardiologist, be sure to see an electrophysiologist. they specialize in inappropriate rythyms. man can't believe i'm not sure how to spell that, as it is my life foggy syndrome anyway, they know more about the special tests you need as opposed to a regular cardiologist. good luck morgan Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 24, 2004 Report Share Posted May 24, 2004 (edited) From KarenM:veryblueI assume a cardiologist has diagnosed you with POTS? What is your supine HR on and off the beta blocker? What is your standing HR, on and off the beta blocker? Do you know for sure if all the beats are sinus in rythmn?Karen M. Edited May 24, 2004 by MightyMouse Quote Link to comment Share on other sites More sharing options...
Guest veryblue Posted May 24, 2004 Report Share Posted May 24, 2004 Karen, my supine heart beat runs anywhere from 100-120 off the betas and 90-100 on them. Standing without the betas is 130 and up and on them is usually in the low 100s. Yes I have had a holter and all of it it in sinus rhythm. No I dont think I have IST cuz my heart rate goes up 30+ BPM when standing and sometimes my BP will drop as well. My thyroid has been tested as well as a myraid of other things. But how can it be POTS. My EP wont diagonise me with POTS neither will ym neuro...they both want me to have an ablation to stop my fast heart beats but I'm scared its POTS and dont want to ruin my life anymore. I dont understand why ablations are so bad...I mean how can they harm your nervous system more...I dont get it...I dont get myself...all I know is that I want some answers...mayo wont take me cuz I dont have Dx...everyone keeps telling me it's IST cuz they tell me the "P" in POTS is postural meaning I would only have tachycardi when upright. Can somebody help me make some sense of this please? Quote Link to comment Share on other sites More sharing options...
Merrill Posted May 24, 2004 Report Share Posted May 24, 2004 Veryblue, just curious, did you read my reply to you on May 3rd above? Please reread it. The reason to ask your cardiologist to look again at the details of your 24 hour holter monitor is to find out what your heart rate is WHILE YOU ARE ASLEEP (not to look at the sinus rhythm). The answer to that is essential. For people with POTS, HR goes down during sleep... and that's not because we're lying down. (What happens to our bodies during sleep is different than what happens during wakefulness--no matter what our "posture." And what happens to your heart rate during sleep if you have IST is different than if you have POTS; at least that's how my cardiologists explained it to me when they were giving me a diagnosis.)Also, it doesn't sound like you've had a tilt table test. It only sounds like you're trying to measure your heart rate yourself. The TTT is one test that's considered diagnostic for POTS. If you haven't had it, ask for it. And again, blood pressure changes all the time--for everyone, including people without dysautonomia. Checking it by yourself can make you more anxious, not give you the data you crave. (BP is not what doctors look at when they're trying to find a cause for rapid heart rate; it does, however, explain a host of symptoms--including fainting--that SOME people with POTS suffer from.) People on this board can help you to the extent that we understand what's going on within our own very complex bodies. We all suffer to a different extent with our POTS; we all have different test results, different reactions to medications, different lifestyles, and more. We can share all that information and provide encouragement and support, of course! That's the best part! But I just don't think anyone can give you a definitive answer! And as the forum disclaimer notes, "The content of this forum is in no way a substitute for professional medical advice, diagnosis or treatment."By the way, if it's any consolation, my heart rate--as well as many others on the forum--is way higher than yours both sitting and standing and lying down too. I've learned to accept it, I live with it, and I take care of myself as best I can. I drink a lot, salt my food a lot, wear compression hose 18 hours a day. I try not to worry about it so much; it's not dangerous, my heart muscle is of normal size and function. (Irregular heartbeats, of which I had more than a thousand during my 24-hour holter, are also considered normal.) That's my experience; hope it helps you some way.Also, as MightyMouse suggested, you should try to do some reading of the research articles available on the NDRF.org site as well as on this DINET site.Good luck. Quote Link to comment Share on other sites More sharing options...
Karen M. Posted May 24, 2004 Report Share Posted May 24, 2004 VeryBlueBefore you go to ablation, you need to consider ALL the tests required. If your EP doc won't run them, then find another doc that will. Ablation should be your very LAST resort. You don't want a pacemaker. I would listen to the advise Merrill has given you. Have you had a Tilt Table Test? What tests have you actually gone through? I know a 24 hour monitor, but what was your readings during sleep, like Merrill suggested? You need to give us more data to help you. How much beta blocker are you on and which one? Is that the only med you're on?Karen M.MerrillWhat are you doing for your treatment of POTS in the way of meds? You say your HR's are still high, how high? You also spoke of abnormal beats...what kind?Karen M. Quote Link to comment Share on other sites More sharing options...
Merrill Posted May 24, 2004 Report Share Posted May 24, 2004 Karen, I'm not on any medications for a variety of reasons (some of which I've posted elsewhere and don't have time/energy to repeat). I'm OK without them; some days (or some hours during any day) my symptoms are less tolerable -- and I just have to go sit or lie down, drink a glass of gatorade, complain to whoever wants to listen for awhile--tho mostly I don't feel like talking cause it's hard enough to get the words out sometimes! My body seems to set its own limits, and I'm learning to listen better to what it's telling me. I've had this forever, but I learned what to do to take better care of myself only a few months ago.Since I started doing the things described in earlier post today, my hr has come down some; I just checked, and my pulse sitting ( 105) and standing (128) tell me that I'm slowing down a little. I don't monitor my hr, and I try not to check too often--knowing what it is doesn't help me much. I'm forgetting the name of the irregular beats; it's been awhile and I'm either old or brain foggy or both. Let me know if it's important to you, and I'll check my records at home tonight.Thanks for asking,Merrill Quote Link to comment Share on other sites More sharing options...
Karen M. Posted May 24, 2004 Report Share Posted May 24, 2004 MerrillI totally understand not wanting to repeat and only having limited energy. You don't have to go looking for stuff on account of me. Relax, having high HR is enough to deal with. Just curious about others...did you have a tilt table test done? Was it on or off meds and what happened to you? What other tests did you have? If it's too much to go in to, it's ok. I'm new to this board. I can't believe I've been living with POTS for 11 years and I just found this board. I have Addisons and Thyroid disease too.Karen M. Quote Link to comment Share on other sites More sharing options...
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