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nantynannie

Anyone Feel Terrible When Hr Is Not Bad?

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Hi Everyone,

Just wondering if any of you feel terrible when your heart rate isn't that high? There are times when I am hot and flushing and shaking and feeling terrible and my heart rate is only 115-120 or so.

So when we take BB's to lower the heart rate, does the lower HR in and of itself make us feel better? For those of you on BB's, do you feel better just from lowering the heart rate? It seems like I have symptoms even when my heart rate isn't that bad. Thanks!

Ann

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Hi,

I'm not on beta blockers, but I feel bad most of the time. Weather my heart rate is high or low. I have had times when I felt like I was going to pass out, and checked my heart rate, and it was low. Real low. I think the H/R is only one measurable problem with this. And because we can measure it it seems like it is the cause for all of it. I think that the H/R is kind of like the fever you get when you have the flu. Just because you take tylenol doesn't make the flu go away. It may make you feel better for a time, and it will take your fever down somewhat, but when all is said and done the flu is still there, and it makes you feel lousy! Just a thought.

Suzy

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Hi,

My vitals don't necessarily reflect how I feel. When they are bad I feel bad, but I might feel bad and they are within the normal range.

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Yep...I feel pretty bad most of the time, regardless of my HR and BP. I think it is just all part of the autonomic system not working correctly regardless of what our vital signs are. One doctor also told me that cerebral perfussion isn't always accurately measured by peripheral BP, so maybe this explains some of what we experience as well.

~ Broken_Shell :)

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Oh sure. There is the ...

1. Tachycardia on standing feeling bad,

2. The exhaustion afterwards feeling bad

3. The nausea and morning ick feeling bad

4. The after meals feeling bad

5. The body pain feeling bad ...

I could go on ... ;-) Point is only a few are evident with tachy symptoms, but IMHO all relevant to an autonomic imbalance.

Here's an interesting sidebar ... I have a biofeedback device of sorts (the one I used in my youtube video) and I have had a chance to watch what happenes FOR ME (only) during some of the really bad flaires. My pulse meter which does averaging might be picking up a pulse rate of 85-95, my BP looks normal .... but the skin response and heart beat chart shows that my pulse is having HUGE swings of varience on inspiration.

Its normal for our pulse to speed up when we inhale and slow down when we exhale ... and I've used this grapher all the time, from deep meditation to peek of POTS flaire and I know what's normal for me. So even though my pulse seems fine -- the chart will show a 30 point difference between inhale and exhale during a bad flaire. It's actually quite impressive.

My skin response which is typically low also shoots up rapidly during these episodes. Its interesting to watch it all come to a peake and then slowly work its way back down. Much different than if I was having a panic attack (in which case the tachycardia is clear and unbidden) and also different from the POTS tachycardia on standing.

I've chaulked it up to some kind of ANS glitch that comes on from time to time whereby my body seems to struggle with handing off between the sympathetic and parasympathetic branches of the ANS.

But who knows?!

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There have been many times when I have felt really bad and have checked my heartrate only to see that it is perfectly normal. Confusing. I agree with others here that our bodies are more generally out of whack with Dysautonomia, and while sometimes our heartrates reflect/cause it, sometimes we just feel awful without any bells and whistles going off.

Amber

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I just feel bad pretty much all the time, no matter what my vital signs say. It only gets worse when things are out of whack. morgan

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My heartrate does not have to be high for me to feel bad. Many times when I'm lightheaded, shaky etc, I check my pulse and it's fine.

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Gosh yes!!! And has been the source of my biggest confusion.

I do feel much better on beta blockers.....I am able to stay out of the hospital due to them. But I always feel bad.....or almost always.... on the BB my heart rate is pretty good.

If I do no activity...lay on couch all day and am on BB...I could do better. I did hear the hear rate is just a compensatory response to the blood not getting to the brain.

But again...I am very new to this. Any very thankful for all of you!

Erika

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Hi Ann,

I also can feel terrible when my heart rate is normal. In fact, sometimes I feel worse after a tachycardic episode is over. I find sometimes I can push through the tachycardia (if it's not too high - like over 140), but then I feel really exhausted when it is over, even though my heart rate may have come down. I've learned that even though I can push through it, it's not usually a good idea.

I find, because the BB keeps my HR lower, it improves my standing tolerance and decreases the palpitations, which is a BIG help. However, I do not find it helps much with the general fatigue or brain fog. It does help avoid some of the post-tachycardia exhaustion I experience because it keeps my HR lower. Hope that all makes sense.

Summer

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Yes, I feel awful when my HR and BP are "normal." How is your BP when you are feeling bad? You may want to check. I don't think an HR of 115-120 is all that low, though.

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I also feel bad when my hr is normal, and it was worse when I was on beta blockers.

The strange thing about BB's for me was they would dramatically change my HR (my "tachycardias" were sometimes only 85-90 on BBs) but they didn't change the other postural sensations. I often had uncomfortable, pre-syncope sensations when I was standing even if my hr was only 85. The difference was I could remain standing -- feeling uncomfortable, and feeling like I needed to sit down, but since my hr didn't continue going up and up and up, I didn't actually HAVE to sit down.

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I too feel bad most of the time. I did learn something very important from my testing at Cleveland Clinic about my heart beat that seems to explain why I feel worse at some times. While I was still connected to the 12 lead EKG monitor recovering from my TTT, I experienced a major abrupt horrible worsening of my symptoms. The tech marked the ekg strip and when the dr. looked at it she commented that before the episode the AV node in my heart was controlling my heart rate. (This is where your heartbeat is supposed to originate from.) When I started feeling bad, my sympathetic nervous system started controlling my heartbeat. The Dr. said that the two were battling over control of my heartbeat. So no matter what my heart rate is, I definately feel worse when the sympathetic nervous system is over reacting and trying to control things. This was recognizable on the EKG strip as the dr. showed me the differences. I don't have any more info on it other than knowing that's what happened. I don't know why it happened or what we are going to do about it, but I will be asking when they call me with the full testing report.

Just wanted to share that. Of course I can't speak for anyone else and maybe this is only the case with me. It sure explained my feel bad episode though.

Babette

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