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calypso
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I can't believe this ... after six months of high blood pressure, I now, just in the last few days, have developed low blood pressure. I was instructed by my doctor to check my BP twice daily since I had my daughter, and it's usually been in the 130/80s range, and rarely below 110/70. Now it's 88/62, 90/70, and even 85/75 one time. The pulse pressure seems to narrow (as my systolic goes down, my diastolic goes up). I think I recall someone (maybe you, Nina?) saying this is common with POTS.

But then I checked it a few nights ago, on the same day that it was low in the morning, and it was high again. I don't understand how you manage BP when it's like this. I obviously want to prevent any damage to my heart from the high BP, but I don't want to feel like crap and dizzy with the lows.

Does BP have an evening-out effect on the heart? For instance, if you have highs and lows but your average BP is normal, does that still do damage to the heart over time?

Amy

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I can't answer you about the damage to your heart, sorry. I just don't trust doctors yet to give me an honest answer about some things. They say that POTS won't damage your heart.

I have very low blood pressure almost 24/7 now. I occasionaly have a run of high blood pressure. I'm dizzy most of the time.

What medications are you on currently? Have you contacted your doctor about this yet?

steph

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I'm not sure about the damage issue, but I have big swings in pressure and at times, low pulse pressure (that's when the diastolic and systolic pressure are close together).

Nina

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Amy,

Isn't it strange what can happen with this crazy illness sometimes? I don't have any answers about the damage to the heart, but I did want to ask- is this your first baby since you developed POTS? I know you had mentioned previously that you were nursing and thinking about weaning, if you have begun that process, or finished nursing, then definitely the hormonal shift could have a lot to do with it.

Have you started or stopped any meds recently?

If not, maybe it's just the warmer weather setting in. Sometimes there are no clear cut answers, but rather lots of little things that can contribute. Good luck :)

Jessica

P.S. Did you ever receive an e-mail from me a few weeks back? I was hoping to hear back but never did and was very interested in talking to you ;)

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Steph - I am on 25 mg metoprolol 2x/day. I have an appt. next week so figure I'll discuss things then. How pots doesn't damage the heart is beyond me. My cardiologist said you can definitely get tachycardia-induced cardiomyopathy if the heart rate is not controlled. I assume you mean pots won't hurt you if the heart rate is controlled?

Jessica - I just e-mailed you back. Sorry I took so long! I developed pots after I had my daughter, and yes, I did recently cut out a feeding or two. So maybe the breastfeeding is keeping my pressure up somehow. It also is hot here; only in Wisconsin does it go from 40 degrees to 88 in a matter of a week or two.

I know you guys don't want to hear this, but I'd rather have low BP than high ... so long as it doesn't make me faint. I know low BP if severe can lead to lack of blood to the brain and such, but I am more scared of heart disease.

Thanks for the feedback.

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Hi calypso

It sounds like your experience with POTS is similar to mine--it was worst post partum and that's when it was finally diagnosed. I did also have bad symptoms in mid to late pregnancy. Anyway, I had both high and low blood pressure post partum and the tachycardia. Like I said, it has evened out now--blood pressure went back to consistently low normal within eight months after delivery. I am on the very lowest dose of beta blocker now and could probably discontinue it.

As far as high blood pressure damaging your heart, I think, conventional medical understanding is that it has to be consistent and long-standing to cause permanent damage to your heart. Going for weeks or months only (not years) with elevated BP is not going to damage your heart. Also, what my doctor told me is that cardiac myopathy is only a concern with tachycardia regularly in the 120 BPM range, while resting. In other words, I guess our bodies can in general take a beating from POTS and keep going without suffering a secondary illness. It is hard to believe, I know.

Well, hopefully you will experience what I have--a great reduction in symptoms and improved blood pressure and heart rate. I agree that when you stop breastfeeding that is going to help too.

Katherine

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Calypso, I too was concerned about possible damage to the heart -- even the person administering the stress/echocardiogram the first time told me that over time, tachycardia can lead to an enlarged heart muscle (which apparently isn't a good thing). She was shocked at my high resting heart rate (that day it was 148; they brought it up to 193 on the treadmill and made me stop, saying they didn't want to see what would happen if it went over 200). But I know my heart's been going this fast for more than 28 years... and it's of normal size and function.

But after I was diagnosed with POTS, and they saw on the holter monitor that my heart rate dropped down to well within the normal ranges during sleep, the docs set my mind at ease. They said they wanted to continue to monitor me for problems down the road--perhaps with annual echocardiograms to play it safe. (I was diagnosed 6 mos ago and have a follow-up appt in a couple weeks; I'll report back...)

I just reread your post and saw that you were asking about the effects blood pressure swings have on the heart--not high heart rate. Oops. :angry:

I don't have a clue what my pressure is; I never check it myself. I think the bottom line, tho, is that it's true what others have said--the heart is an extraordinarily tough cookie as muscles go...

take care,

merrill

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Hello Amy, and hello all, finally made it back in here...well like you Amy I am either high or bottom out. My cardiologist finally got my med. to control my BP, then poof it out of the blue began to bottom out. Sunday I was up all day and yesterday couldn't stand up with out feeling faint. I am just about at my wits with this POTS. I'll just take each day as it comes...best wishes to you.

Southern Blessings, Rita

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:) It is beyond me how we can have so much heart pain and problems and it can't be damaging or fatal. I have had days were I fall to my knees in pain. I have even once thought I was having a heart attack the pain was so intense. I have pots and Barlow Syndrome and yet they say I must not worry its "normal". These doctors have a different normal than we do. :P

As for the blood pressure, I take medication twice a day and can't even get it to be "normal". My blood pressure is always low and I am use to it. I remember when I did my tilt test they could not believe that I did not pass out. I have had this problem for so many years I just fight it and take my tablets.

Medication helps a bit but does not take the problem away. I am petrified that once my husband and I want to start a family I have to leave all medication except my heart tablets. Can you imagine a passing out pregnant lady in constant pain. Funny sight.

:P

Good luck

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Amy,

I also have wide ranges in my BP, but it usually runs on the lower end. And more frequently than not, my pulse pressure is very narrow (90/80, etc) Sometimes I only have one number for my BP :P I am on atenolol for my heart rate not my BP but I guess it lowers it as well. It helps keep the higher end of my tachy away but I still have some daily. Hope this helps :P Not sure about the heart damage, all I can say is that the MD told me that I have 3 leaky valves but that it is very mild and of no concern :) (Maybe not to them) But the stucture of my heart is "normal".

Danelle

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