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Does anyone elses Blood Pressure fluctuate wildly between readings?

My BP can increase from the slightest of activity for example switching sides in bed or walking a little etc. These activities can increase my bp from 124/82 to 150/95.

I currently have POTs with a increase in HR and diastolic BP upon standing.

I am concerned about the regular spikes in my bp while doing regular activities.

 

 

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@Sam4877 - yes, this is typical for me. I have hyperadrenergic POTS and commonly my BP would have those numbers. When supine my BP is normal(ish) but as soon as I move, and especially when standing up, it used to jump up to 150's/90's with high HR, exactly as it does for you. The diastolic hypertension along with tachycardia and symptoms of fight-or-flight are text-book for HPOTS and are caused by the blood vessels suddenly and severely constricting due to norepinephrine dumping. What has stabilized these symptoms for me are the following medications: Carvelidol ( beta blocker ), Diltiazem ( calcium channel blocker ), Guanfacine ( BP med ) and Lexapro ( SSRI - balances neurotransmitter levels in the brain ). In addition to that the MOST effective treatment are regular IV fluids, they prevent vasoconstriction and normalize my BP. Today my readings are completely normal regardless of position or activity, unless I am in a flare. 

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1 hour ago, Pistol said:

@Sam4877 - yes, this is typical for me. I have hyperadrenergic POTS and commonly my BP would have those numbers. When supine my BP is normal(ish) but as soon as I move, and especially when standing up, it used to jump up to 150's/90's with high HR, exactly as it does for you. The diastolic hypertension along with tachycardia and symptoms of fight-or-flight are text-book for HPOTS and are caused by the blood vessels suddenly and severely constricting due to norepinephrine dumping. What has stabilized these symptoms for me are the following medications: Carvelidol ( beta blocker ), Diltiazem ( calcium channel blocker ), Guanfacine ( BP med ) and Lexapro ( SSRI - balances neurotransmitter levels in the brain ). In addition to that the MOST effective treatment are regular IV fluids, they prevent vasoconstriction and normalize my BP. Today my readings are completely normal regardless of position or activity, unless I am in a flare. 

Thanks for the reply @Pistol

Do you take all this medication together? And have you also been checked for Pheochromocytoma?

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@Sam4877 - yes, I tested negative for pheo. And yes - I take all of these meds together - and then some!!! But I did not start them all together. I tried Clonidine, Mestinon, Metoprolol, Propanolol and Norvasc first but none of them worked well enough or I could not tolerate them. I started with the lowest dose of Carvelidol first ( 3.125 mg ) and then increased slowly to 25 mg. I still had problems with vasoconstriction and High bP so my specialist added the Diltiazem ( 30 mg twice a day to start with, increased slowly to now 240 mg XR version daily ). Since I still got high BP with flares we added guanfacine 0,5 mg ( half of the lowest dose ) and it helped. Once we started weekly IV fluids my BP stabilized to the point that I could decrease the Diltiazem to 180 gm and go off the Guanfacine altogether. Today my BP's run 110/60 to 90/50. I no longer have these drastic fluctuations and only run high when in a triggered flare, and that gets rectified - again - quickly with administration of IV fluids. 

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I have hyper-POTS also and 'autonomic dysreflexia'. My BP is very labile.

When resting it is usually around 90/60 or lower, and then when doing anything that activates my sympathetic nervous system, even slightly, my BP shoots up with my diastolic usually around 100.

Thankfully it is very short lived and laying down flat reverts my BP back to a low reading, but it is very tiring and difficult having the readings bounce around so much.

When I did my tilt table test around two years ago now, the specialist said to me that they recorded my beat to beat blood pressure (so recorded the pressure every single heart beat using a special monitor) and she said that my BP fluctuated so vastly and she's rarely seen it in patients bounce around quite so drastically. This means the autonomic nervous system is struggling to be stable.

 

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@Scout - the BPs you list are like mine. Earlier this year I was in ICU for a week and they had the monitor next to my bed set to take my BP every 10 minutes. Every reading was completely different than the previous one - and I was on bedrest!!! I also took 3 autonomic seizures while there and they were all 3 caught on monitor and showed that right before the seizure my HR and BP shot up. 

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Interesting thread. I seem to be mostly the opposite but with very labile BP too. I am hyper POTS with supine hypertension and immediate orthostatic hypotension on standing which slowly rises for about 5 minutes then decreases again. My worst symptoms are when BP gets too low. @Pistol I am interested in what you said about high diastolic readings. Mine tends to be elevated mornings and sometime other times regardless of systolic (dehydration I think). I am starting to wonder about my RAAS and if I am over medicated with carvedilol and guanfacine causing recent orthostatic hypotension drops with lots of symptoms. Weather is definitely a factor but ours has been pretty mild (60-low70s) for several days with steady barometric pressure and low humidity so I don’t think it’s that. My problem is if I don’t take the doses of beta and alpha blockers the supine hypertension is >150/80 which is what my Drs want to avoid. Like others every tiny thing, talking on the phone, Dr visits, concentrating causes BP to elevate to 150+/85+. A new cardiologist said “permissive hypertension” is ok but not >150/85 but will cause problems in a couple of decades (I am 58). I had never heard that term before. Anybody else ever heard of that?

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1 hour ago, p8d said:

A new cardiologist said “permissive hypertension” is ok but not >150/85 but will cause problems in a couple of decades (I am 58). I had never heard that term before. Anybody else ever heard of that?

@p8d - permissive Hypertension means that they purposefully allow ( permit ) your BP yo run high. They do this for my sister who has autonomic neuropathy with at times severely elevated BP's. Im her case they were not able to keep her BP's from spiking, so they said that as long as she stays below 150/90 she is OK. This would be too high for other people but in her case it is acceptable as a upper limit. 

It is possible that you are overmedicated with these meds. Depending on the dosage you may need to ask your doc to decrease? In my case I took Carvelidol. Diltiazem and Guanfacine with moderate relief of Hypertension, but once I started on weekly IV fluids I no longer needed those dosages b/c my BP had stabilized and ran 90/50. I decreased the Diltiazem but still ran low. Recently I weaned off the Guanfacine ( I took only 0.5 mg ) completely and now run more in the 100/60 range. 

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My blood pressure certainly rises the more upright I become, though may be more stable the better I am feeling. My symptoms don't always necessarily always go away when sitting or lying down though and my blood pressure can also sometimes be normal while I'm quite symptomatic.

I took my BP for the first time in months yesterday while feeling quite bad, expecting it to be elevated, but it was within a standard range. So yeah, blood pressure can be another source of frustration, especially if that's a tool doctors are using for diagnosis. 

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My bp is all over the place, too. Whenever I'm at a clinic it's 150+/90+ but at home it's 110s/70s up to 130s/90s. My doctor isn't concerned about it. I have insomnia issues where every time I start to fall asleep I'll get a weird feeling in my head and then have hot flashes, panic, muscle spasms, blah blah blah. My doctor thinks it's from a sudden increase in bp. I think it's related to hormones. I have a muscle relaxer and an antihistamine that I can take but it's not always enough. My doctor doesn't want to give me anything to lower my bp because she's afraid it will go too low. So I just struggle along. 

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I too have a crazy orthostatic hypertension.  I was 190/90 in the ER and they did nothing.  The felt that my feeling horrible was driving my pressure up; it eventually went down to 150/82 on its own.  My pulse is an average between 50-60.   At rest I will go to 110/76.  Then when I move about it bounces back up. On my beat to beat I did the same thing.  I started on Carbidopa last week and guess what, my b/p went up.  I have caught at 170/130.  I feel awful. As someone else stated, the elevations do not always correlate to my feeling horrible.  I also drop at night.  This all seems very cyclical.  Sometimes I am awakened by dizziness and my pressure is up.  What to do???????????????

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@boom99 - I used to have problems with diastolic hypertension like that and - in addition to other meds - Guanfacine has helped me a lot. I know of several other POTS sufferers ( with hypertension that did not respond to other hypertensive agents ) that respond well to it. I have HPOTS and it was prescribed to me by my autonomic specialist. Some people also respond well to clonidine.

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