Blood Pressure Rising On Standing?

[JustaSpark]

Hello!

I'm new to the forum and am glad to have found it

I was diagnosed with POTS recently. I've have had symptoms for years, but was still able to push through and be quite active. It was only in the past year where things have progressively gotten worse, now to the point that I can not stand for more than a few minutes at best. I haven't been able to find a real cause as to why the sudden worsening.

I am wondering if anyone experiences higher blood pressure on standing, or know what could be causing it physiologically?

For example, BP goes from 102/55 lying flat to 137/90 on standing, plus an increase in heart rate of 50+bpm (sometimes it doubles).

These above vitals are from a recent hospital visit for hypovolemia requiring 5L of fluids, and I am also on a low dose beta blocker, but as a rule, the BP and HR both rise on standing regardless.

It has been a challenge to make sense of this and get care, because most of the doctors I have seen only look for a drop in BP on standing and don't know much about POTS or dysautonomia to begin with. One cardiologist wanted me to try Florinef for the hypovolemia/POTS, but another specialist said no way since my blood pressure RISES when I stand, so it is not indicated.

Most people I've seen with POTS have much lower blood pressures. Does anyone experience or know what could be causing a rise in both BP and HR on standing?

Thanks,

JaS

[Katybug]

Increase in BP is a common finding in the hyperandrenergic form of POTS.

[kayjay]

Yes I have this.

[kayjay]

Your body is most likely dumping excessive adrenaline when you stand. It's compensation for the drop (that may happen so quickly you can't measure it).

When I had my first tilt I had low BP and a qiuick drop in BP which almost immediately became high BP.

It is not true that salt directly raises blood pressure so make sure you get enough salt, it helps you stay hydrated. I also take nadolol and Klonopin. Both help block the excess adrenaline.

FYI I was diagnosed with Hyper pots in 2009. Mayo Clinic Rochester.

[MomtoGiuliana]

I used to have episodes of high blood pressure on standing, when my POTS was more severe. For me, adding salt to my diet stabilized my blood pressure, reducing both highs and lows (which I would also have). A beta blocker has also been helpful for me.

[JustaSpark]

Thank you Katybug, kJay, and MomtoGiuliana for your replies.

I will have to do some more research on hyperadrenergic POTS and bring it up with my doctor again.

kJay: It is interesting that on your TTT, that you had a quick drop in BP then a rise. It makes sense that the higher BP is compensatory in some way.

Unfortunately, in my area there is no access to TTT or upright plasma norepinephrine testing (which I read is used to diagnose the hyperadrenergic type?). The plan is to travel in the next few months to get this done, as it seems like hyperPOTS is treated slightly differently than the other POTS types.

MomtoGiuliana: I have noticed that the higher BP on standing has only been in the last few months for me, where my POTS has been more severe. So it is interesting that you experienced something similar.

Staying hydrated has been a real challenge lately. I am going to try and be more diligent with my salt and fluid intake.

Has anyone tried Florinef with higher BP on standing? Or were you told to stay away from it?

[MomtoGiuliana]

Florinef was never suggested as an option for me. I took SSRI and beta blocker both for awhile. The SSRI also seemed to even out my bp and heart rate variability.

[SarahA33]

Hi, JaS, Welcome to the forum,

I also have Orthostatic Hypertension and POTS w/ the hyperadernergic form. There could be a few reasons why your BP spikes when upright, but Kjay's explanation is the one that my POTS specialist gave to me at the CC. Basically, it's sympathetic discharge and over production of adrenaline. Do you have any symptoms when this happens to you? I sometimes get shaky, forgetful at times, flushed, sweaty,etc.

Your cardiologist may be onto something with the hypovolemia and Florinef, I really suggest talking to he/she about your concerns. . My understanding is that it initially can increase pressures but then as your blood volume starts to expand, it almost works like a salt and water balance, so your pressure balances out. Don't quote me, it has something to do with aldosterone escape.

http://www.dinet.org/index.php/physician-list Here is our physician's List, maybe there is someone in your area that u can find that specializes in dysautonomia and can perform the testing. Best of luck to you, Sarah

[JustaSpark]

That is interesting about the SSRI evening out your vitals, MomtoGiuliana. I will look more into it. Thanks for your input!

Sarah, thank you for the welcome! I wish these illnesses did not exist, but it is nice to be able to connect with people who have POTS, especially the hyperadrenergic type, and not feel so lost and confused.

I do get very symptomatic on standing, and it's become more severe in the past few months. I get very shaky/start to tremble, feel hot, very dizzy, can't think clearly, vision gets dark etc. It sounds very similar to the symptoms you described, and the excess adrenaline response makes sense.

I will have to take another look at the Florinef. My cardio really wants me to try it, it is my endocrinologist who was against it, so I feel like I am stuck between differing medical opinions. I will bring it up with my doctor again.

Thank you for the physician list link. The closest doctor to me is Dr. Raj, so the plan is for me to get referred for testing and treatment there in the (hopefully near) future.

All the best,

JaS

[MomtoGiuliana]

There have been studies on SSRIs and POTS that suggest that 50% of POTS patients are helped by low dose SSRI.

More info:

http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps

[SarahA33]

Jas,

Has your cardiologist had your catecholamine levels checked? (norepinephrine and epinephrine, as well as dopamine) those are our stress hormones, mainly produced In the adrenal glands, basically responsible for the flight or fight response that we have. This is a good article that explains the basics of them: http://www.webmd.com/hypertension-high-blood-pressure/catecholamines-in-blood

You're very lucky Dr. Raj is close to you. He's also one of DINET's medical advisors. This is a great article by Dr. Raj that talks about lab abnormalities and the various subtypes. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756553/

[shathaway0811]

My BP rises significantly when I stand. I'm usually around 98-110/62-85 ish when I'm seated/lying down (significantly lower when I lie down) and then I have a substantial increase when I stand. The highest it's gotten for me is 135/98. And my HR was about 110bpm. I often feel more light-headed when I'm seated, that in between position just does not work for me lol.

[JustaSpark]

Sarah, I am due to have a 24hr urine test for catecholamines in the next week or so (whenever I drag myself to the lab!). I'm very curious to see what the results will be. Thank you for the links. There is always so much to read and learn with this illness it seems.

shathaway0811, thanks for your response! This forum shows me that there ARE others out there who have a rise in BP on standing with POTS, so I don't feel so odd anymore. The majority of the doctors I've seen focus on orthostatic hypotension and just scratch their heads when I do the opposite. Now I can tell them I know of a handful of people who react similarly.

[kayjay]

I just had problems last night. I was at a church event (new church to us and closer to my home). Anyway long story short it was an unfamiliar group of people and everyone was standing and talking so of course I did too. I came home with a very sweaty top, massive headache and feeling like I could vomit. My blood pressure resign was 166/100 (this is once we got home and I had been sitting).

It made me think of your post and the need to mention compression stockings and salt. I wasn't wearing compression and I'm sure it would have helped. I also suggest looking into a long acting Benzo. I've been on/off .05 mgs of Klonopin for years and at this point I'm ready to admit it really helps. I think it helps more than the beta blocker.

The less I stand the better I feel. Somehow I'm dumb enough to try and act "normal" around people I don't know well and I'm paying for it today. If you can walk around do that as much as possible and don't be shy about sitting with your feet up. I was diagnosed in 2009 and still sometimes forget that lifestyle changes can be the most helpful.

[aaron.parks]

Hi all,

It's really tricky taking your blood pressure when you stand... make sure you have someone supporting your arm so your BP cuff is at heart height or otherwise it will read much higher than it actually is. I have noticed that medical assistants often screw this up and let the arm hang by your side.... that's absolutely going to lead to really high readings:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2911816/

I also have a BP rise when I stand. My BP while lying down can get as low as 125/77, and standing I've seen it climb to 165/110 with a heart rate just over 100 BPM. I haven't had the standing norepinephrine test yet, but my 24 hour urine catecholamines were normal, so maybe it's just a reflexive overreaction to a quick drop in BP like others are talking about. Still waiting to hear back about a TTT, Valsalva response test and a QSART that I recently had done.

I think Florinef made this far worse for me: that 165/110 number was after I'd been taking a very high dose of florinef (0.2mg daily). These days with a far lower dose of 0.025mg I haven't seen my BP reach much above 155/98 on standing (and typically it's quite a bit lower than this). I guess the lesson is that florinef may be valuable in many cases but should be used very carefully, not just thrown at every POTS patients like my (former) cardiologist did. It took a couple weeks after reducing the dose to see my standing BP come back down to slightly more normal.

Also, I really don't recommend the wrist based monitors... maybe it's the shape of my wrist that is incompatible, but a top rated wrist monitor I tried would consistently read 20+ points higher than my automatic upper arm cuff and the doctor's manual cuff. My girlfriend's reading with the wrist monitor was nearly correct, but mine was way off. Just be wary, and I think it's essential to have a reliable upper arm cuff monitor, as tempting as the wrist monitors might be.

[toomanyproblems]

Also, I really don't recommend the wrist based monitors... maybe it's the shape of my wrist that is incompatible, but a top rated wrist monitor I tried would consistently read 20+ points higher than my automatic upper arm cuff and the doctor's manual cuff. My girlfriend's reading with the wrist monitor was nearly correct, but mine was way off. Just be wary, and I think it's essential to have a reliable upper arm cuff monitor, as tempting as the wrist monitors might be.

I have to agree on this. They used wrist monitors when I went to hyperbaric oxygen therapy and even though they always made me put it above my heart, the readings had to be off. I was getting diastolics in the 40s and 50s whereas they're mostly 80s and 90s at home. When it was too low they would repeat with a normal manual upper arm cuff with a stethoscope and get a diastolic at least in the 70s. This happened a lot during the 80 sessions I had, one reading going in and one reading going out so 160 times. Mostly wrong going into the chamber though. I'd never trust a wrist cuff after the number of times it was wrong on me even in a pro's hands.