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When I lay down my heart rate is sometimes about 56 , is that ok? When I get up it rises higher to about 112. I do think that I have POTS and I know it will not kill you but it still gives me anxiety attacks when my heart rate rises so much , does anyone else have anxiety with this. I am starting to get depressed because up until about 2 weeks ago my life was awesome and now I have to plan everything on if my heart rate is ok. I guess the main question I have is , is it normal when you are at rest with POTS for your heart rate to be between 55 and 65 and then on standing it rises. My blood pressure stays around 118/80 so BP has not been a prob. I have noticed a few times it has shot up to about 130/85 which is not to high but high for me cause I think my BP is low naturally. Can anyone please tell me some home remedies to ease some of the discomferts and anxiety that come along with POTS. What really makes me mad every doc I go to sais I am fine and I even saw someone who really knows POTS in a leading heart hospital so I mean what is the deal. Sorry to ramble but have been up all night with anxiety and I am depressed over it. Aldo one more thing, does anyone elses eyes get real dry , and sometimes your mouth? Also how come some days I feal ok and some days I feal like crap , and sometimes my feet are freezing cold and other days they are fine . ERRRRR One more thing I promiseeeeeeee. I have not been hardly eating the past week , I pick my fiancee sais and she is trying so hard to put up with me lol but it gets hard as I am sure you all know, do you guys think I could drink Ensure Plus or would that make me worse , I think part of my not eating is worrying if I eat something that makes this worse and then the other is Anxiety I feal like stomach is in knots all the time.

Hope to hear from ya soon and I am still praying for all of you. ^_^

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Chad, SO sorry you are going through all of this. I know how you feel. The heart rates you describe are pretty common here, although some, like me had heart rates dropping into the 30's laying down and for that reason I got a pacemaker. A pacemaker can speed it up but can't slow it down.

Anxiety... Yes, most of us have it, and the more you go with doctors telling you that you are fine the more it grows until you reach the point of wondering which is taking over, the anxiety or the autonomic problems?

Home remedies - we seem to be all over the place here. I drink 2 cups of coffee in the morning and that puts me on a reasonably even keel. Others can't tolerate coffee. I am sure that others here will respond with better answers than I can give you.

Eating. Ensure plus will probably be fine for you, some of us tolerate soup of some kind.

Dry eyes and mouth - I have that problem, I try to hydrate as much as possible and also use artificial tears. Unfortunately, this seems to be part of it.

Cold feet?? That's my cat, Hector's job!

Best of luck to you, come here often, I hope we can help you!

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Ok the pacemaker thing scares me , when you first knew you had POTS did you heart rate go that low then or over time because I just dont understand a lot of whats going on . Pacemaker sounds scary and I dont know anything about them , the docs here are not very smart it seems but o well what can ya do. My heart rate I have never seen go lover than 50. I am sitting up right right now and it is about 66. When I lay down it drops a little more. This will noit kill me will it ? My doc sais no but I trust you people more lol. I am only 21 and a male and yes it seems rare that I would get this . I went to college and played football in both highschool and college. I could run and run and run and now it is hard just to go to the mail box. The weired thing is , every day is diffrent for me , one day I am fine and the next it is h ***. Doc after Doc has told me even if you have POTS it will not kill you it is just very aggrivating but I they just dont get how big of a pain it is . My fiancee dont understand and it frustrates her as one could imagine. It would me to if I were her , we have been together for over 2 years and I have never once been one to lay in bed sometimes all day , I was always active and doing yard work and etc. Now , does the doc think that you will get over it or it will ever cool down for you and if you do not mind me asking what age range you are in , I know that may be inpolite but was just wondering. I will pray for you though and just remeber to cherish the good minutes , hours or days you have . In some way people with a disorder like this should feal lucky , and the reason I say that is because it helps them to appreciate the good in life than no healthy person could ever imagine. It has me , I took advantage of life in genral until now and I see now what others suffer from .

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Chad,

I have a very low resting heart rate for having POTS. In my experience it's not something they're used to seeing, but it happens, just the same. I used to be very active and go to the gym every day, so they're pretty sure that's why mine is so low. Without medicine, it usually stays between 45 and 55 when I'm on my back, and then my spike can go anywhere from 90 to 190 when I stand up, depending on time of day, having eaten or drunk anything, and things like that.

I'd encourage you do do some reading online from potsplace, NDRF, Vanderbilt, Mayo, or DYNAkids. (BTW I'm 22 and had never heard of any of this stuff until I was diagnosed in March.) Hopefully that will help to ease your fears in that I've never heard of anyone dying from POTS. It's not heart disease or a structural problem with the heart (except w/ MVP, but that in itself is supposedly benign). It is a debilitating condition, as you are no doubt aware, and I urge you to read up on it.

I am very sorry you're having these problems, and I hope you've got an appointment with a good dysaut. doctor soon!

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steph37822 I have a question for you or anhyone really

I went to a doc that knows all about POTS and has diagnosed over 25 people with POTS. He did his version os a tilt table test , made me lay down upside down in a table thing and took my heart rate and BP. When laying my BP was about 108 / 80 which is almost perfect but my heart rate was about 60. He took my BP sitting up and the BP went up a little to about 112 / 80 and heart rate went up to about 75. Then he took my BP and heart rate standing and my heart rate standing was 112 and BP 116 / 80 . He said that this was not typical of POTS patients because my BP for the most part stayed normal and heart rate was not to to high , eventhough 112 is kinda high he said he has seen on many many patients with POTS that there heart rate upon standing was between 120 - 200+. He also said that most POTS patients in tilt tabel test have a low BP and high heart rate with symtoms. He is going to run more test but I mean now I am really confused . He once again said that my nerves may be the underlying factor because I have not herdly eaten in a week nor drunk much at all which could be the reason for my change is heart rate and etc. What do ya get from this .

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Hi Chad,

I think Steph has given you some good advice. POTS usually means a continued increase in HR of 30 bpm or more, regardless of whether your BP is changing. So based upon your tilt table test and the symptoms you describe, it does sound like you may have POTS.

It can be useful to check your heart rate, because it gives you information that you can pass along to your doctors. But I would focus more on how you are feeling rather than what your HR is. If you are feeling awful, then it makes sense to check your HR and rest if it is too high. Most of us don't have structural problems with our hearts, and if this is the case, then beating too fast is not really dangerous. You can find this out by getting an ECG and stress test thru a cardiologist.

I was a totally healthy person and this hit me out of the blue, just like you. I know it's really scary at first. Hopefully in time as you read more about POTS,your anxiety will lessen. Anxiety doesn't cause POTS but it can sure make your symptoms a lot worse, so it's important to try and keep it in check. You should also try to eat right and on time, because this will help your symptoms a lot too. I think most of us here try to take really good care of ourselves and it does make a difference.

Feel better soon,

Rita

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Sorry you are having such a difficult time. The heart rate changes sound like typical POTS and your reactions very normal under the circumstances.

Check out my post on "for those with problems with palpitations" a couple days ago. There is a link to an audible ta by Claire Weekes who may be of much help to you in coping with some of the POTS symptoms. Audible.com lets you preview (like 10 minutes) for free. Once I heard the free section I knew she had information that could help me.

Good luck on your healing journey,

EM

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Chad, the dx for POTS is as follows:

http://www.dinet.org/pots_an_overview.htm (see the DIENT site for the full description)

Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising."

Says nothing about your blood pressure while this is happening. It appears your doctor may have confused neurcardiogenic syncope diagnostic criteria and/or combined them with POTS.

Here's the info on the dx for NCS ( http://www.dinet.org/NCS/ncs.htm --see the DINET site for the rest)

"When a person stands up, the pull of gravity causes blood to pool in the lower extremities. This can result in a lack of blood supply to the upper body, including the heart and brain. Normally, the body automatically adjusts to the lack of blood supply by increasing vascular tone, heart rate and cardiac output. Blood vessels contract, heart rate increases, systolic blood pressure remains about the same or drops slightly while diastolic pressure rises slightly (Brunner & Suddarth, 2000, p. 546).

In those with neurocardiogenic syncope this compensatory mechanism does not always work correctly."

Your resting heart rate is well within the normal range, as are the blood pressures you posted. BP fluctuates throughout the day, with the average reading of 120/80--but somewhat lower and somewhat higher are considered normal. Much higher or much lower may be abnormal, and swings of both are abnormal (I have this). Also, a close pulse pressure is not normal (where the upper and lower number are close together, like 110/100, or 100/92).

Nina

Edited by MightyMouse
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