Normal Pulse While Standing, But Still Having Other Pots Symptoms?

[janiedelite]

I posted recently about noticing an increase in my ability to be upright and that some days my upright heartrate is in the 60's. Here's my vitals right now:

- upright is 119/86 pulse 61 (the BP is normal for me, pulse is normally at least in the 90's)

- lying down is 125/75 pulse 53 (these numers are normal for me)

When my heartrate is normal, I do find that I can sit and stand without nearly as much shortness of breath, dizziness, etc. But I still have other symptoms like chest pain, fatigue not relieved by rest, and particularly the burning skin pain. Today the burning skin pain is worse than normal (probably because of the summer heat). However, I've noticed on other days when my pulse is normal that the burning skin pain is worse, as well as the generalized fatigue.

On other days when I'm feeling less painful and more energized, my standing heartrate can be quite high.

Any thoughts?

thanks

[lieze]

I haven't quite figured this one out yet Thankful it's happening to me too.

I know that we're not supposed to journal right here on the forum but maybe if we could try to note it down somehow and share we might see some correlation.

Right now all I can relate it to is it seems like if I get really good sleep my heart rate are lower.

Lately I have had trouble sleeping. I am a group leader of a forum and when there is drama in the group and most people get on late at night and I have to intervene or whatever then I have trouble sleeping.

I realize this is bad for my POTS so I am trying to force myself to turn the computer off and just not worry about it.

I have tried this a couple nights just recently and I still couldn't sleep so I don't know that I can blame it on my leadership role or responsibility I feel there.

So for me on these nights for whatever reason I don't sleep well the next day aren't horrible but not good either. Pulse seems more elevated headachey etc etc.

I haven't taken it yet today but my head is telling me it wasn't good sleep last night.

But I had that excellent day I posted about with the frisbee where I rested well and I felt good and pulses were normal all day.

I wish I could get into a good pattern and have more of those good days.

I've had those low days too and not sure what the culprit is of those.

[lieze]

Oh the other thing-I tried to edit and pushed the wrong button.

On a good day for me my bp is a little higher like anywhere above 100 systolic I feel great.

On my not as good days for sure when I check it I'm getting like 89/something.

Aha I wonder for me if it's fluid intake or salt intake?

I wonder if I need to keep that bp up to have a good day?

[jem15]

I wonder myself if heart rate always has to be correlated with severity of symptoms... I've been sick for 15yrs and my symptoms get worse each year. Right now they are the worst where I'm unable to function or drive. However, my heart rate hasn't been that high. Even in the past, it'd be a bit higher than normal, but nothing crazy, usually under 120, maybe a little over when standing. But now, it's been the lowest it's ever been, maybe because I've forced exercise over the past year, and even though I dont feel any better from it, maybe on some level, it's working to overall lower my HR.

Also, my recent tilt just came up with a 29beat HR increase, instead of 30+, so more borderline. I've heard you might not always "catch" the HR increase, but either way, my symptoms are the worst they've ever been, and my resting/standing heart rates are much lower than they've been, and really fairly normal. So I don't know what that means.... my symptoms are still very "POTSY", and the drs still seem to think POTS is the cause, even with the borderline HR increase, so I don't know if the HR dysfunction is just one sign of autonomic dysfunction, and that even if the HR isnt high, that doesnt necessarily mean the rest of your body isnt still out of whack.. ha, if that makes any sense?

[lieze]

Today ended up being a bad day here.

Well I colored my hair because I was getting comments about my grey or white hair.

I guess I put it off for so long because I hate doing it.

The odor coming off of it is horrible still.

Ever since then I'm semi okay sitting or laying down.

When I get up I spike up to 130 hr and hang around 120 and my head feels creepy.

I am not sure as to the reason which POTS rule I broke to do this to myself?

[janiedelite]

Thank you both for your responses!

Caterpilly, It's so wierd because I'll have a few days in a row when my HR is 60's when upright. Then, I'll have a few weeks when I'm back in the 90's-110's when upright. It just changes lately from one day to the next. There is no correlation with sleep deprivation, activity, or hydration. Although, like you I've been much more active in the past few months (also forcing myself to exercise because of some horrible back pain). So my highest heartrate is still lower than it was a couple of years ago.

And even when my heartrate is normal on standing, my arms and legs still turn those various shades of purple, red or white.

In your situation, I certainly wonder if there is something underlying your POTS since you are getting worse over a span of 15 years. I certainly hope you can gain your ability to drive again soon.

Lieze, it is understandably frustrating that POTS symptoms can be unpredictable. The only advice I have is to be diligent with all of the non-pharmaceutical helps your doc recommends (and to keep trying their pharmaceutical suggestions too). Most of those here who experience some control over their POTS symptoms have done so after years of trial-and-error. Still, I think that a really predictable symptom day eludes even the best of us!

[jem15]

I know, this is what I'm wondering lately too.. If there's either another underlying cause for the POTS, like a mito disease or whatever... or just another separate condition that's aggravating it... who knows... I was diagnosed w/ Hodgkin's disease in year 13, but they say that's unrelated to any of my symptoms. Though my "POTS symptoms" worsened the year before I was diagnosed, and chemo really made everything really bad. Eventhough I've been done with treatment for over a year, I'm still not functional, and I blame it on the chemo aggravating the POTS and whatever else is going on. Ha, so frustrating to have these mysterious conditions... I just wish doctors tried more, ha, at least as hard as we do to figure out whats wrong/how to fix it;-)