Major Blood Pressure Issues

[Rene S.]

I've always run a bit on the high side of normal for my b/p. But it was pretty much within range. Now, there's no holds bar. Don't know how to deal with it. Going up steps today for instance, I walked at a leisurely pace, and my b/p was 191/76, h/r 88 (that was sitting). I got so scared. It's been doing this all week and just walking around my h/r is over 110. Just the slightest movement seems to make my b/p and hr jumpl I'm not sleeping well and haven't been for awhile and wonderiing if this may be the cause. My body is worn out from the fluctuations. I can also tell when my b/p rises because my body starts shaking.

Some of my reading today:

146/81, hr 106

118/72/101

150/79/ 86

191/76/88.

When supine, it's perfect

115/69/ hr/80

117/65/ hr/ 85

113/68/ hr 83

I keep getting headsaches, I guess from the fluctuations. This started Sunday night, after I had to take nitro for a possible prinzmetal episode

I'm frustrated and just want my pressure to be normalized.

I used to take a beta which kept everything on an even keel. I was only taking 6.25mg of metoprolol once or twice a day and that brought it right down. Infact, at night, my diastolic was too low. I can't win.

I spoke to Dr. Goodkin who has tried Calcium channel blockers (made my heart race and gave me palps!), he's thinking of trying Lisinopril (ace inhibitor) but he's afraid it will crash my b/p big time.

I just want my heart rate down and sitting in bed all day is not the answer for keeping my b/p down.

Any suggestions? Firewatcher told me about melatonin and Butcher's Broom as natural alternatives.

The weird thing is that on Sat. I was pretty much in the normal range. This has me scared. It can't be good for the heart to go from 191/76 and then to 113/69. I can't figure out what is triggering this and why a simple act of stair climbing is making me so short of breath and racing my heart and raising my b/p. No one seems concerned, but me!

Just sitting here typing I can feel my heart pounding. I want the days back when my b/p was 90/60 and heart rate was 60 consistently before I developed this DD.

Of course if I were to go to the hospital, I would be laying down and my numbers would be totally normal. Grrr.

I asked my cardio about doing a 24 hr ambulatory b/p monitoring but his answer was we know your pressure is labile.

I've seen on the boards that some of you walk around with high readings and they eventually go down.

I'm just scared of damaging my heart. Also, my gastroparesis has been acting up, I have no appetite and i'm not getting nearly as many calories as I should.

Just trying to get a handle on all of this. I don't want to stroke out!

Thanks for listening and any thoughts would be appreciate.

You guys are the best!

Hugs,

Rene

[runningshoe]

I tend to run high too. What meds are you on? I take a beta blocker nadolol. With pots your bp can vary a lot. Good luck!

[janiedelite]

All I can say is I'm with you... My diastolic BP goes up at least 30 points every time I get up. If I do any talking, it's often over 150/100. If I lie down for a few minutes it's 115/55. Get up and it goes up again. I hate it. My upper body flushes, face burns, head aches, and my chest hurts so much. I'm sitting here with a wet rag around my neck because of flushing right now. I've had multiple EKG's, and I get regular echocardiograms, so I believe I'll be aware if I start having heart problems. But what they'll do about it if that happens, I don't know.

When I was at Mayo, these severe fluctations were documented during the TTT. The neurologist there said that my hyperadrenergic state is my body's overcompensation for the pooling. If I treat the pooling effectively, my adrenaline produced in response to standing should decrease. He suggested mestinon, which I haven't tried yet because we're still trying to get pregnant. If that didn't work, he suggested nadilol 20 mg every morning. I haven't used either of these meds so I can't tell you if they work.

Can you take a beta blocker just during the day, so that when you lie down at night you won't have hypotension?

Just a thought, but I feel your pain.

[Mrs. Burschman]

I wish we could trade blood pressure points. Those who are high could give away some. Those who are low could get some. Then we'd all feel better!

[futurehope]

If I followed my blood pressure and heartrate fluctuations daily, I would drive myself into anxiety. Why? Because my readings fluctuate all the time depending on.......you name it.

What to do? I don't take readings of my blood pressure and heartrate very often and I don't worry about the fluctuations.

Now, I can say I don't worry about the fluctuations because I've had enough testing done so that I am secure that I am doing all I can do and nothing serious is going on. Now, obviously, if something is out of the ordinary for me, I'll take my readings.

If I have autonomic dysfunction, my understanding of the term dysfunction is that I have blood pressure and heartrate adjustment abnormalities. I don't expect good readings.

Are you striving for something that is unattainable with your present autonomic dysfunction? What exactly are you hoping to achieve? If you figure out how to somehow normalize everything......great! Let us know.

But in reality many of us on this forum have fluctuations and we all learn that this is our "new normal".

Do you see what I'm saying? Do you really need to be anxious about all this? Could you possibly lower your expectations? To do this, you will have to feel secure that all medical helps in your case have been tried, and that all pertinent testing has been done to rule out possible causes of symptoms.

I'm sorry, but dysautonomia stinks. I agree. I hope you feel better soon. I don't mean to minimize your particular symptoms and I am aware that they could be serious. But, at the same time, I wanted to remind you that sometimes our expectations do not match with what our malfunctioning bodies' can do. Just a thought.

[ramakentesh]

It is the unofficial view of most POTS specialists that postural hypertension is not a particular problem of concern. Apparently most of the detrimental effects of high blood pressure are from arterial blockages rather than bursting so intermitant fluctuations in blood pressure arent viewed as a problem.

Remember that in POTS, while you may have increased blood pressure and peripheral resistance, you may also have venous pooling, reduced blood volume, reduced orthostatic blood volume or excessive vasoconstriction, all of which wouldnt really result in serious brain related complications.

[Rene S.]

Hi lina,

Not on anything currently for b/p. I know that something has to be found.

Thanks!

Rene

[Rene S.]

If I followed my blood pressure and heartrate fluctuations daily, I would drive myself into anxiety. Why? Because my readings fluctuate all the time depending on.......you name it.

What to do? I don't take readings of my blood pressure and heartrate very often and I don't worry about the fluctuations.

Now, I can say I don't worry about the fluctuations because I've had enough testing done so that I am secure that I am doing all I can do and nothing serious is going on. Now, obviously, if something is out of the ordinary for me, I'll take my readings.

If I have autonomic dysfunction, my understanding of the term dysfunction is that I have blood pressure and heartrate adjustment abnormalities. I don't expect good readings.

Are you striving for something that is unattainable with your present autonomic dysfunction? What exactly are you hoping to achieve? If you figure out how to somehow normalize everything......great! Let us know.

But in reality many of us on this forum have fluctuations and we all learn that this is our "new normal".

Do you see what I'm saying? Do you really need to be anxious about all this? Could you possibly lower your expectations? To do this, you will have to feel secure that all medical helps in your case have been tried, and that all pertinent testing has been done to rule out possible causes of symptoms.

I'm sorry, but dysautonomia stinks. I agree. I hope you feel better soon. I don't mean to minimize your particular symptoms and I am aware that they could be serious. But, at the same time, I wanted to remind you that sometimes our expectations do not match with what our malfunctioning bodies' can do. Just a thought.

Hi. No, I'm not trying to drive my anxiety up. My very high b/p readings have only been going on since Sun. and I can definitely feel that my pressure is up. Headache, dizziness, etc, and it's scary.

It's scary that the only way I seem to feel ok is to lay down. I have no expectations when it comes to this ailment. We're all in the same boat. We want to be back to our normal selves and every time another whammy comes along, it is scary, at least for me. And I haven't had the best luck with drs because most don't know about the condition and even some of the specialists that I have seen disagree on treatment. It's most frustrating.

Just seems that it can't be normal (even for us) to have such a fluctuation in such a short period of time and that a leisurely walk up the steps would bring up a b/p so high.

I was only looking for some advice and perhaps some views on how others manage to get their b/p somewhat stabilized if they can't take beta blockers.

Thank you.

Rene

[Rene S.]

It is the unofficial view of most POTS specialists that postural hypertension is not a particular problem of concern. Apparently most of the detrimental effects of high blood pressure are from arterial blockages rather than bursting so intermitant fluctuations in blood pressure arent viewed as a problem.

Remember that in POTS, while you may have increased blood pressure and peripheral resistance, you may also have venous pooling, reduced blood volume, reduced orthostatic blood volume or excessive vasoconstriction, all of which wouldnt really result in serious brain related complications.

Hi Ramakentesh,

The weird thing is that my b/p is high once I sit down from standing up or walking the steps. The only way it is normal is laying. As soon as I move around even if it's just to lift my head or turn around, wham, pressure goes up. And it's not like I'm taking it every 5 mins. I can feel it and how my body responds. Also my resting h/r is getting higher and higher. Very frustrating.

Thanks so much for your advice. I love reading your postings.

Take care,

Rene

[potsgirl]

Hey R,

I'm sorry that you're still having problems with your BP and HR being so high. I know it must be scary - I'm hoping that when you find the right doctors you'll get on an appropriate medication protocol and that will make a sizeable difference. I think you probably need to be on some meds that will help you regulate your BP. I know you're having doc problems, it's just finding that one right doctor who will work with you to find the best answers. If it makes you feel any better, stair climbing is a common source for high BP and HR's for many of us. Just going up 12 stairs puts me entirely out of breath for at least a couple of minutes. Frustrating, no?

You know we all support you and I'm hoping that you find the right doctor very soon, who can rule out other health issues and focus on your main problem and treat that successfully. You'll make it, R, you're a strong woman!

Cheers and Hugs,

Jana

[Sophia3]

Hey Ruekat

My BP and HR can be all over...from BP spiking when I first stand in recent years, to dropping in recent weeks...HR highest when standing or dehydrated...can jump 40-50 BPM just getting out of bed! Thus my coffee maker is 4 steps from my bed, ready to go in the morning.

It's disconcerting but I guess after years of this stuff (19 but official ANS dx 1998) I don't take my readings much EXCEPT when I have knew symptoms and numbers...like I sometimes now show Orth HYPOtension and never used to. By that I mean it shows up immediately "sometimes". On my TTT years ago it never dropped, just screaming HR.

BUT now over the years lying at rest will show low bp 86/46 and sometimes normal HR in 70s or 80s.

So it's nice to document changes if you have new symptoms. Ask for stress echocardiogram if that might give an answer.

Otherwise, check meds, salt/fluids and stuff.

But my HR can jump simply turning over in bed thus the name "Postural" O.T. oh and cleaning a cat little box out is TOUGH somedays to..the bending over.

Good luck with dealing with your situation and getting answers as you see fit.

[Guest tearose]

After years of meditating I recently discovered that if I focused extremely hard on lining up my gut, brain, spine and breathed in a certain way, I am able to get my bp to a livable 110/70! When I first tried meditating my bp up it would sometimes float to numbers like 134/90 while sitting! I then worked at learning how to bring it down. I am not sure what the mechanism is that is enhanced by this focused meditation but I suppose it is sometype of "adrenal regulation meditation"?? Anyway, it helps in times when my compression is not on or I am too sick to wear compression.

It doesn't cost anything to try it so maybe you will.

BB's made me terribly ill.

I don't take any medications and manage with compression, hydration, pacing activity, meditation and seat cane if needed.

best regards

tearose

[janiedelite]

I just wanted to add that I know for certain that anxiety is not what causes our hypertension. When I was having the TTT done, I was joking around with the tech, just being silly, and noticed that my BP was 190/110 just because I was talking. And I was supine! As soon as I stopped talking, BP went to 130/80. On the other hand, I do have an exaggerated BP response if I'm experiencing anger or anxiety. But most of the time it's uncontrollable.

Knowing that I produced excessive adrenaline upon standing (as many of us do), this is an entirely unconscious event. It's unfortunate that the adrenaline can produce anxiety on its own, further exacerbating the cycle. And the side effects of the excessive adrenaline are really intolerable (flushing, can't breathe, chest pain, headaches, migraines, nausea, etc.). It's not just the high BP.

I like Tearose's suggestion for meditation and breathing exercises. My PCP suggested that to me a while ago. I got a video from the library on how to relax your body using breathing techniques. These are especially useful when I'm having adrenaline surges prior to bedtime. I fall right asleep. Problem is, the surges return shortly and I wake up a couple hours later. I've tried to use these techniques throughout the day, but got frustrated because whenever I move it seems I release more adrenaline. I'm sure I'm just not practiced enough!

[skyblu]

Ruekat,

I know how scary it can be when we get new symtoms or when an old symptom pattern changes. I have flucuations in my BP but it's usually more on the low side than high. That pattern changed for a while last January after I got over a virus which I had for 6 weeks. My BP was high and stayed that way for three months. Then out of nowhere it went back to being more on the low side again. I remember being more worried about the high BP than I am about it being low because I'm more used to having a low BP.

I think BP and HR flucuations are just the nature of this disorder.

[ramakentesh]

impaired norepinephrine reuptake could explain that - NE stays at the synaptic cleft, causing spiked BP after standing or movement.