Orthostatic Hypotension

[Alexander]

Dear All,

I was wondering whether, in additio to POTS, you are having orthostatic hypotension. I am aware that it is believed that these two are separate conditions but I think there is a lot of overlap. Otherwise we wouldn't feel dizzy all the time.

I am regularly having a blood pressure around 110-5 over 60-65 but when I stand up and saty still for lets say 5 minutes it can be 90 over 60. Sometimes when I also sit upright my BP is lowerish..

So, how many of you are getting some degree of orthostatic hypotension?

Best

Alex

[futurehope]

FYI I don't totally know everything about my condition as of yet, but I do not think that during the 10 minutes my neurologist had me on the tilt table that I responded with a blood pressure drop (though I do not know what would happen if the test were conducted for a longer period). But, dizziness is and was my constant companion. In my case, I do not think the dizziness is caused by a blood pressure drop. I think it's somehow related to the circulatory system having difficulty keeping the blood flowing to the brain. (That's my guess.) I'm saying that because it feels to me like somebody would feel if they had hypoxia. I had worsening symptoms when I was at higher altitudes. The higher altitutes made me really sick. There's a little less oxygen up there. But that's just a guess. I have yet to have any tests to prove my theory (if, indeed there are such tests).

[Michelle Sawicki]

Hi Alex!

I almost always have a significant drop in blood pressure upon standing. I know a lot of doctors are now publishing info that says POTS does not include orthostatic hypotension, but I continually get letters from patients who have it. OH is traditionally defined as a decrease of at least 20 mm Hg in systolic blood pressure upon standing. Sometimes my bp drops that much, sometimes it doesn't...but it almost always drops. I should also tell you that I actually had high blood pressure when I first became ill. Personally, I think high, low and normal blood pressure can be associated with POTS.

Take care,

Michelle

[MightyMouse]

I am DX'd with both POTS and NCS. I have a very dramatic drop in BP that coincides with the rise in HR. My lowest conscious bp as measured during a test in a hospital was 30/--. I have lost consciousness a number of times, but mostly I get enough symptoms in advance to lie down before I crash to to floor (tremours, sweating, head rush, neck/shoulder ache, nausea, and dizzy/lighteaded). My HR typically slows just before I faint...so in combo with my very low BP, it's just not enough to keep my brain and vital organs perfused with blood...so the body protects these organs by putting me in the horizontal position.

The body really is an amazing set of mechanics. It's a wonder that the majority of humans function perfectly rather than the minority with system glitches like ours. Pretty amanzing to me anyway.

Nina

[ethansmom]

My BP tends to drop when standing too, although not to the degree that some people experience- it may go from 120/70 to 90-100/60- and I feel pretty awful when it does that. I have been diagnosed with POTS only, since the BP is generally stable- but I can't seem to tolerate beta blockers because they drop my BP way too much when I'm standing- it is really cool how the body protects itself- BP drops, HR increases to keep things moving along!! I feel much better that way...wihtout the help of BB's, but still not perfect of course.

[EarthMother]

I've been tracking my BP and HR this week -- bought new wrist cuff monitor that is quick and easy -- because I see a cardio next Thursday and I want to talk with him formally about POTS vs what he previously dx'd a few years back as "idiopathic orthostatic hypotension" -- translated we-don't-know-why but your blood pressure is dropping when you stand. I didn't need a tilt table test to tell me that.

As you indicated mine goes both ways ... sometimes my heart rate (especially in the morning hours) jumps up 40 or more beats per minute when I stand vs when I am reclining. However my BP sometimes stays normal. Other times it's my BP that drops with or without any noticable change in my HR.

I was diagnosed with CFIDS about the same time I had the orthostatic hypotension diagnosis -- but because I never new anything about the latter, I have focused (and attributed) my symptoms coming from the chronic fatigue syndrome.

However after finding this site (MANY THANKS) I think I need to take a fresh look at the overall symptoms and see if some of these are related to POTS.

Always searching!

Good luck in your journey.

EarthMother

[justin]

i tend only to have diastolic hypotension these days (which i believe is defined as a drop of more than 10 mm Hg)..it used to be both values would drop, but no longer.

usually my diastolic is in the low 60's, but it can range anywhere from 55 to 70.

systolic is near normal in the 110's.

a quick unrelated note: after my 3 month trial of beta blocker, i tried going off it. i lasted a week and didn't feel like dealing any longer. i was much more symptomatic, and my HR went right back to where it used to be. 80 lying down, 90 sitting up, and 120+ standing. plus i had lots of skipped beats and palps again, and i think remembered how annoyingly bad they feel. soooo, i called my cardiologist and he said "well, if you feel better on them, keep taking them" and gave me a scrip for 6 more months worth.

wow, what profound medical advice. i'm in awe.

so i'm continuing with them, even though i hate all the side effects, but i'm gonna demand a different drug route at my follup appt in february, cause it's just not enough.

[EarthMother]

Justin,

Have you tried magnesium for the palp/skipped beats? I take 800-1000 mg a day and it may take a month or so before you notice but it really helps to regulate the rythm. For me the skipped beat sensation was far more troublesome than the high heart rate. Mine also goes up 120 often simply by standing .... but only on bad days. (Or in this case the last two weeks, but it still doesn't feel as bad as when it was doing that AND skipping all the time.)

Good luck,

EarthMother

[justin]

huh, sorry i never replied to you. i forgot. redundant now, maybe, but....i do take magnesium, yes. although not anywhere near as much as you do. maybe a third of that? it's a calcium/magnesium combo...

[Guest Julia]

My blood pressure often falls to average 65/48 when standing ----but I don't feel faint---just very sluggish. I do get those symptoms of tremors, shoulder pain, light headed and such like Michelle explains-----but it usually happens after being on my feet for prolonged times. Dr. Grubb thinks I have a high threshold----but typically OI is not a huge complaint for me----but it is a complaint on a smaller scale. It's just not the worst of my symptoms.

Julie

[amb]

I have both POTS and Orthostatic Hypotension. I was sent to a doctor that does research on syncope, POTS and other disorders that are similar(I can't remember all of them). She did the table tilt test, blood volume, some other nuclear med test- I can't remember what it was called. In her report, she has POTS and POH listed separately. I'm going to assume that they are two different disorders, at least according to her.

Justin, what side affects are you getting from the beta blocker. I'm on lopressor, but the generic version, and it has helped with the POTS symptoms. I started off on 25mg's, but my symptoms came back and I actually fainted (vs. feeling like fainting). The doctor cut the dose in half and that helped a lot. I can almost walk a straight line now & I rarely have the shakes or palpitations or dizziness except for lately- I have no clue why. The only problem with the smaller dose is that I have to cut the pills into quarters and they are only scored for half. What a mess.