When Is Bp Too High?

[NMPotsie]

You've probably answered this question a million times, but I'm in NM without a POTS doctor and I am desperate for answers.

I'm hyper POTS and when I have a surge I shake, shiver, pace around the house like a madwoman, and get really nauseous. My biggest concern is my bp, which will spike to 160/130 (usually) or even 180/150 (highest). It's normally 90/60 range.

I am trying to get some meds to deal with the surges but in the meantime at what point is the BP high enough that I should go to ER? Or is this something I should just deal with? The surges last anywhere from 1-4 hours, though I am sick as a dog for days after. Thanks!

[arizona girl]

I can't answer when to go to the er. But when I get high swings like that, I get horizontal and go lay down. My bp always drops when I lay down. Pacing around will just make it worse because your body is trying to compensate for the low blood pressure probably by sending out extra norepi which constricts the blood vessels, sending your bp higher. For me nausia happens right as I'm getting ready to faint. I would ask you doc to do a supine then standing catecholomine test to prove that is what's happening. This is a test Dr. Grubb had my cardio do and I went from 400's to 1100's. If I don't get down when I rise that high I am at risk for having a faint/syncope. Your body will cause a faint if you rise to high and that can happen suddenly and you could injure yourself in a fall.

I also will sometimes put an ice pack on my stomach or lay on one. It can take anywhere from 5 minutes to an hour for my bp to come down, depends on how far I pushed myself to be up right. If your normal bp 90/60 I'm pretty sure that is considered hypotension.

I also see you have anemia, is that under control. Anemia can cause a high heart rate.

Any one else want to weigh in on that?

[L4UR3N]

Your diastolic number is very concerning and would be appropriate for the ER. Typically any diastolic number above 120 is considered a hypertensive crisis (this damages organs and puts you at a considerably increased risk of stroke). I know that it can be difficult for us when we have SO many blood pressure swings in one day, however I would definitely look in to developing a plan with your doctor to keep your diastolic number out of the danger zone. I cant give you medical advice, but I know that if my diastolic number were that high I would not hesitate in getting myself to the ER.

[NMPotsie]

Thank you for your answers. They are both very helpful. I did have a plasma cat test which showed high norephinephrine (from 300 supine to around 800 standing) but I wasn't having an episode at the time. I would wager the number is MUCH higher when I do. The problem is when I am having these episodes I cannot lay still; I will twitch all over and shake. I will try the ice for sure. When my BP was the highest I thought that exercise would help the "anxiety" (they told me I was having panic attacks at the time); BIG mistake! That's what pushed it so high, and it stayed there for quite awhile. I appreciate your sharing what you would do in a similar situation; my docs have been no real help with this issue.

[NMPotsie]

Oh, also, yes my b12 is under control (ish). Up to 300s from 150s, and climbing. Still low, but improving.

[HyperPOTS8]

NM: for me when I have those episodes what helps most is to lay down in a hot bath in a dark room (no stimulation). High catecholamines as occur in hyperPOTS cause vasoconstriction and the heat causes vasodilatation. This is very different from those with the much more common partial dysautonomic form of POTS that worsens with heat because they are chronically vasodilated. Oral clonidine or labetolol would be the best agents to use as needed to lower BP when it surges as they both have a short half life and quick onset of action and both block the sympathetic nervous system. For me, clonidine is best (I have both).

[ramakentesh]

NM: for me when I have those episodes what helps most is to lay down in a hot bath in a dark room (no stimulation). High catecholamines as occur in hyperPOTS cause vasoconstriction and the heat causes vasodilatation. This is very different from those with the much more common partial dysautonomic form of POTS that worsens with heat because they are chronically vasodilated. Oral clonidine or labetolol would be the best agents to use as needed to lower BP when it surges as they both have a short half life and quick onset of action and both block the sympathetic nervous system. For me, clonidine is best (I have both).

Its not that simple. Neuropathic POTS patients can have denervation hypersensitivity leading to hyper spikes; some patients with slanchnic pooling also have reflex sympathetic activiation manifesting as postural hypertension, and most patients with resting vasoconstriction have moderately high NE levels but NE potentiation from alpha receptor hypersensitivity perhaps from high angii and reciprocal low nNOS expression.

Postural hypertension can be a coping mechanism in the face of profound changes in cerebral autoregulation.

There are patients with endothelial disfunction who leak volume through capillories when tonic, there are patients with increased peripheral blood flow and reduced stroke volume and those with splanchnic blood flow. Complicating these things are 70% of patients with reduced blood volume and crossover of presentations in some patients.

But all POTS have reduced stroke volume, thus all POTS is a failure of the peripheral vasculature. Cerebral autoregulation may be the result of may occur as a consequence.

The delineation your referring to is old.

[NMPotsie]

Wow, this is all very confusing. My doctor thinks I am Hypovolemic and possibly have MCAD, and that the adrenaline surges are caused by my body's attempt to compensate for pooling and/or MCAD episodes. I have tried taking a bath and the heat made it much worse. I wanted to pass out but couldn't because my bp was too high, I guess. I have read that hyper patients shouldn't do excess salt, but he told me to eat 10g/day and it has helped and I haven't become hypertensive except when I'm experiencing an "episode." I think, if I'm reading this right, that's what rama is referring to re: the compensatory mechanism? Heat exacerbates my symptoms almost as badly as caffeine (which I think would kill me at this point).

I saw a bad neuro on Monday in my attempts to find a doctor (#13!), so I'm hesitant to discuss it but he said if the diastolic gets above 100 I should go to the ER. He also prescribed xanax, on top of my beta blockers, BID. I tried this and was comatose the entire day. No good for me. On to the next one...

[E246]

Hi,

Sorry you are experiencing this. it was one of my worse symptoms. I found valium calmed it down and then started a low dose of Fludrocortisone which virtually stopped them altogether immediately.

I also drank plenty of water, lay down to try and stop the adrenaline firing and made sure I didn't let my blood sugar drop.

My episodes also went on for hours and I did go into hospital a few times. With your BP's I would get it checked.

Good luck.

[HyperPOTS8]

NM: I have also read articles, etc stating that patients with hyperPOTS should not take salt, but I have documented severe hypovolemia by blood volume analysis at Mayo and take both Florinef and a very high salt diet and they have recommended that in my case. Before being diagnosed, my weight would drop from my baseline of 103-104# to 97# in about 5 days. Now I adjust my salt intake based on my daily weight. For me, it is clear that I have increased sympathetic activation (eg flushing, increased BP, etc) when my blood volume is low. For me, though, that is also clearly not the only thing causing overactivation of my SNS. I think it's also clear that some people with hyperPOTS do not have hypovolemia and do not respond to salt/Florinef. There are clearly many subtypes of POTS. Also, as you can read in Dr Raj's POTS review in the Indian Pacing Journal, it is not clear in some patients whether the primary problem is MCAS or if the catecholamines activate mast cells.

[ramakentesh]

Resisting salt and sodium is crazy - most POTS patients - particular hyper varieties - have demonstrated low blood volume. id wager a medication might be needed to retain that sodium as in my case clearly, but the arguments against salt are caused by people applying models of hypertension (where there is TOO much volume) to models where there is too little.

[anna]

I was far more POTSie when I was told to cut back on my salt intake, plus my BP is much higher even with BP med's if I do not use salt. I have always had difficulty keeping fluid in so I am sure when I cut back on the salt I feel worse this is because I am not like other folk with regular essential Hypertension.