Can Anyone Explain Why

[Notgivinup]

when my heart rate is high (126) standing. And B/P is low 108/82.

My diastolic is always high.

I'm standing in the kitchen tonight realizing that I feel pretty good. Clear headed, not dizzy. I take my B/P & pulse, expecting it to be somewhat normal. But NO, it's not, and yet I feel fine!! This stuff is driving me crazy. It makes no sense.

I'm playing doctor with myself since it's been 3 years and no one's been able to figure me out. This morning the ONLY med I took was my cymbalta. I've stopped everything else, but added back in adderall. I took 20mg. around 3:00. Felt pretty good shortly after that kicked in, and the rest of the night. Weird. Oh, wait I forgot I also took two aleve for back pain.

Help..............Please

[mvdula]

Well, just want to say...I wonder about this too. Haven't taken bp/hr in a long time, but when I used to.......it did not always explain my symptoms or lack thereof. That's why I agree w/ the poster who said (in another thread) that there is something the Drs/researchers are missing here. The only way I can reconcile it in my mind is that the hr/bp fluctuations, like on ttt, are just a clinical marker that Drs can use to Dx POTS (and they do sometimes account for some symptoms).........BUT that is not all that's going on with us. My episodes are not explained by hr/bp...at least not completely.

PS I was also suspected by Bev to be hyper-POTS, based on my description of symptoms....but my catecholamines did not show that. I liked Bev, but seems to me she suspects this far more often than is the case.

[firewatcher]

There is a natural circadian rhythm to every person's body. HR and BP fluctuate during this time, as does their response. I am a nightowl, my body naturally wants to stay up later and sleep late in the morning; I'm genetically predisposed to be that way. Many people are. I feel better at night, my symptoms are less and I react less to standing. In the morning (like now) my HR is really high (118) and BP is crazy (97/84) and I feel awful! A lot will depend on the amount of sleep you get and when you get it. Take a look at when you do your best and you might see a pattern that points toward a circadian rhythm issue.

[kayjay]

I feel worse when things are swinging a lot. If my bp is high and stays high ( not super high - then I feel like I'm gonna die ...soon) I feel ok. They call high blood pressure the "silent killer" because you don't feel it.

When my BP is low I feel spacey and lightheaded etc.

When things move back and forth between extremes I feel the worst. I think this is when I get my worst headaches and feel sick to my stomach.

Do you think you might feel better when you are more "stable?"... I mean the POTS OI version of stable....LOL

[lieze]

Well even though your pulse is a bit high? Those vitals don't just scream at me!

I think if you're feeling good keep up the good work.

I have said before that I am just in awe when I feel like total crap and take mine and get like 90/54 and a pulse of 80. I think oh my goodness I'm going to live to be 100 and feel like crap!

ha ha!

But I think if you're feeling good it's a good sign. Keep up the activity if you can to the point just before fatigue so that you can sit down and rest and not just feel sick.

I think the activity is good for you and you sound like you're doing great-hang in there!

lieze

[Christy_D]

I monitered my sons bp/hr for 3 months daily. There was no rhyme or reason as to how he was feeling in relation to his bp/hr. On days when his vitals were normal, he could be bedridden or other days when his vitals were crazy high, he could be feeling good. I don't understand it.

He is also a night owl. He is sick everyday in the morning thru part of the afternoon. Usually by the evening he is fine(still feeling nauseated but functional anyway).

[Notgivinup]

Thanks everyone for your replies. Today I did the same thing as yesterday, but did NOT feel good.

My newest revelation....YOU CANNOT STOP ZYRTEC cold turkey!!

I felt ok yesterday because I still had enough zyrtec left in my system.

Today I didn't have enough, and had WITHDRAWALS. Headache, nausea, terrible brain fog, all day. Once I realized that, I took one and within 40 minutes headache and nausea gone!

Nowhere does it tell you stopping zyrtec will cause withdrawal, but a little google search and you'll find thousands of people who say it does! Most people get intense itching upon stopping, but for some.............headaches, and nausea occur. I think once the histamine receptors get use to the med. and then you just stop, histamine goes crazy. That's my un-educated, real persons, theory.

Soooooo, will try again tomorrow, adderall + zyrtec. Nothing else.

I just LOVE being my own guinea pig / lab rat.

Notgivinup.

[summer]

I have a theory about this, or at least how it might work for me....

I always feel terrible when my systolic BP is lower than 90. No exceptions.

Now here is the strange part... Often my HR will be up around 130-140, and my bp around 100/70 and, for a while, I will feel fine like that, because my body is compensating adequately so that my BP is not dropping too much.

But I think that after a while, this high HR exhausts me, and I start to feel like crap, even though, at times, my HR and BP may have already stablized. To me, it seems almost like an after-effect of the tachycardia. Of course, sometimes the tachycardia lasts and I might feel the exhaustion while I'm still tachycardic. For that reason, I might feel ok with my heart rate way up, or I might feel bad, depending on how long it's been up there.

I find that on days when I am really tachy in the morning, I feel very fatigued for the rest of the day, even though my HR might have come down.

That's my theory. Does that make sense... does this happen to anyone else?

Summer

[sjprice23]

when my heart rate is high (126) standing. And B/P is low 108/82.

My diastolic is always high.

I'm standing in the kitchen tonight realizing that I feel pretty good. Clear headed, not dizzy. I take my B/P & pulse, expecting it to be somewhat normal. But NO, it's not, and yet I feel fine!! This stuff is driving me crazy. It makes no sense.

I'm playing doctor with myself since it's been 3 years and no one's been able to figure me out. This morning the ONLY med I took was my cymbalta. I've stopped everything else, but added back in adderall. I took 20mg. around 3:00. Felt pretty good shortly after that kicked in, and the rest of the night. Weird. Oh, wait I forgot I also took two aleve for back pain.

Help..............Please

The way it has been explained to me by my doctors is that I must have neurally-transmitted AND cardio-transmitted POTS. The Cymbalta would have helped your neurotransmitters while not affecting you BP/Heart Rate (cardio). I had to ask this same sort of question because WHY would the Lorazepam I take help take the dizziness and overall 'yucky' feeling away sometimes, but my heart is still racing like crazy! And that's because the Lorazepam helps one side of the story, but since it doesn't help the MAIN cause, nor does it ALWAYS take away the symptoms, other medications and lifestyle changes have to be in play as well.

Does that make sense?

[ramakentesh]

Try weighing yourseldf when you feel good and when you feel bad. You may notice a correlation with overall volume.