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Scout

High BP record

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I was feeling off earlier. I'd just walked from one end of the house to the other and checked my BP. It was 180/130.

I got to the ground immediately and lay flat. It then dropped to 90/58. 

For the next few minutes I felt like I wasn't... present. I was just elsewhere, in a fog, my brain just not functioning or something. I hadn't completely blacked out and could feel my dog nudging me and hugging my arm (he's a sweetie), but it was an odd feeling. 

That was a scary experience and I believe the highest I have ever seen it. It only seems to surge for seconds, but it still terrifies me. 

I just needed to rant about that. Sorry, but it spooked me a lot and it's comforting to talk it through. 

I hope everyone is having a lovely day.

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Hi Scout I’m sorry that happened. I wonder if you should contact your health care provider especially if you are on meds to raise your BP. I’m currently going through a period where my symptoms are flaring and my BP’s are running higher as a norm. When it gets up so far I feel dizzy and start to feel everything is surreal. Not sure if that is the same feeling you get. I have not recorded mine as high as yours but in honesty I don’t take it that much. The feeling you describe kind of hanging in limbo in a bad place I’ve been going there often lately. When I am there it feels like I am on the verge of some type of crisis so it is an uncomfortable feeling. It can last for an hour or so before I come out of it. I am amazed that your BP came down that quickly. Mine seems to take a while to come down and then will hang out around 115/70 I guess I don’t keep taking it at that point. 

Are you still walking around the house or are you fearful of that activity now. I hope you can get some exercise. 

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@lieze Thanks so much for the reply. I'm so sorry you're also having that happen. I really relate to that uncomfortable feeling you mention, of it feeling like a crisis. My surges used to be 150/100 typically, so it's odd to me that they're getting worse. It makes me feel like what I am experiencing is degenerative. But I am thankful at least that they are very short lived and only seconds usually. Sitting down or laying down flat always "fixes" it. It seems to revert me back to a normal / low BP. 

To be honest, I'm fairly sure I'm experiencing baroreflex failure of some kind. My specialist already told me I had autonomic dysreflexia, which causes crazy high BP surges. Just need to finally get better medication. I'm not on anything presently that would increase BP. 

It does make me nervous to walk around and do things to be honest. I just take things very slow though (and am getting a wheelchair very soon!). I occasionally check my BP when walking around just to see what it's up to, and so I can keep a close record for my specialist. Sometimes it is fine or quite low (for example, a few days ago, I was walking around a lot and it was 85/55) and then other times — like today — it is ridiculously high. *sigh*.  Dysautonomia is a real mystery! 

@Outaker Thank you, and indeed, I am OK now. Stayed sitting down for the rest of the day! 

 

 

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7 hours ago, Scout said:

For the next few minutes I felt like I wasn't... present. I was just elsewhere, in a fog, my brain just not functioning or something. I hadn't completely blacked out and could feel my dog nudging me and hugging my arm (he's a sweetie), but it was an odd feeling. 

@Scout - I am familiar with this feeling and in my case it is considered syncope. I usually experience full loss-of-consciousness or seizures but at times I do not loose consciousness fully and am somewhat aware of what is happening, I can remember who was present and what was said while I was out but I can't move. They still consider that syncope. And no wonder - that was a crazy drop in BP! I would call your specialist right away and tell him/ her so it can be addressed. It must be scary for you to know it could happen again!!! Be well!!!

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3 hours ago, Scout said:

@lieze Thanks so much for the reply. I'm so sorry you're also having that happen. I really relate to that uncomfortable feeling you mention, of it feeling like a crisis.

 

Sometimes it is fine or quite low (for example, a few days ago, I was walking around a lot and it was 85/55) and then other times — like today — it is ridiculously high. *sigh*.  Dysautonomia is a real mystery!

A few months ago I really felt like I was in some sort of crisis. My BP would be all over the place. When it started, it would trend high for several days, then low for several days with no medication influence or any other reason for the swings. At the worst it would be high and then *very* low and back in the same day. An example is I would get readings like 160/110 lying down, then standing up I would be passing out from hypotension. I actually took it and got a pic of a reading of BP 54/40, HR 125 while I was trying to pass out standing up (well, I was actually leaning on the counter taking it trying to support myself). Then I would get my normal hyperPOTS type readings of 118/90 HR 67 lying down and 125/101 HR 105 standing up either in the same day or the next day.

At the same time, other autonomic functions were going haywire. I have gastroparesis so I know I have impaired gastric emptying. But during this crisis my stomach would either not empty, or "dump" as it's called (dumping syndrome). Once I saw easily identifiable pills I took three hours earlier floating in the toilet after having diarrhea. My ability to control internal temperature was at its worst yet. I had hot flashes with severe sweating followed by a backlash of freezing cold cycling every hour and at its worst every twenty minutes. Because it took about ten minutes for the hot flashes to subside and the same for the cold dips, it became a continuous battle. I had large cool packs and a heated blanket on my bed at all times to help. This went on day and night. I couldn't sleep. I was exhausted.

With all these autonomic nervous system controlled functions going haywire at the same time, I came to feel that I had no buffer at this time. My autonomic nervous system was reacting to one extreme then slinging itself into the extreme at the other end of the spectrum. There was no fine control. As I weathered this storm out, I found my internal "buffer" increased and my fine control became better. In a few weeks, I eventually returned to my normal still messed up state but I was way more stable.

Since this episode, I view my autonomic nervous system problems differently. I think of my BP, HR, gastric functions and temperature control in terms of how well I'm doing buffering extremes; how well I'm doing with fine control. This way of thinking is helping me to test out situations that help my "buffer" and realize those things that make it worse. Much of it is out of my control of course. But just having some sort of grasp of what is happening is helping me to feel more in control in my mind, even as my body does weird unexplainable things.            

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When I first got pots last year standing my blood pressure would go up it was 160/100. The last four months or so my blood pressure has been staying very low even sitting down like 95 / 70. When I stand up it drops to about 78 / 65. I don't take anything or do anything different I don't know what happened. It just changed on its own all of a sudden. The strange part is when my blood pressure was high like that my pulse would be 150 155. Now my blood pressure is low oh, and my heart rate sometimes will be 120 when I stand up, sometimes it'll only go to 105. Very strange.

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Glad you are under the care of your doctor and will be getting meds.  High blood pressure for a few seconds probably isn't as concerning to doctors as sustained high BP.   Also it is a normal response to have BP increase during activity - so that might not be the best time to measure.

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6 hours ago, yogini said:

Glad you are under the care of your doctor and will be getting meds.  High blood pressure for a few seconds probably isn't as concerning to doctors as sustained high BP.   Also it is a normal response to have BP increase during activity - so that might not be the best time to measure.

Yes, it is normal for BP to raise somewhat during exercise, but it's not normal for it to be 180/130 when I had very slowly walked from one end of the house to the other, and then making me faint. There's nothing normal about that. Diastolic, especially, isn't supposed to increase much at all when you exercise. Mine doubles. 

Sorry, I don't mean to sound blunt but I get told by so many people in my life "oh that's probably normal stop worrying" so it's quite a sensitive and difficult thing when people tell me it's just normal, when I know it's anything but normal. I can't even shower without going into a hypertensive crisis. 

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14 hours ago, Scout said:

Yes, it is normal for BP to raise somewhat during exercise, but it's not normal for it to be 180/130 when I had very slowly walked from one end of the house to the other, and then making me faint. There's nothing normal about that. Diastolic, especially, isn't supposed to increase much at all when you exercise. Mine doubles. 

Sorry, I don't mean to sound blunt but I get told by so many people in my life "oh that's probably normal stop worrying" so it's quite a sensitive and difficult thing when people tell me it's just normal, when I know it's anything but normal. I can't even shower without going into a hypertensive crisis. 

I understand. Those numbers under those conditions would make it easy to feel desperate and scared. It certainly makes me feel that way when I have abnormal BP readings and I've never had a diastolic that high at home.  And this isn't new to me either. It's very difficult to find doctors who can grasp what's happening. I hope you get some help.  

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8 hours ago, toomanyproblems said:

I understand. Those numbers under those conditions would make it easy to feel desperate and scared. It certainly makes me feel that way when I have abnormal BP readings and I've never had a diastolic that high at home.  And this isn't new to me either. It's very difficult to find doctors who can grasp what's happening. I hope you get some help.  

Thanks so much @toomanyproblems. I really appreciate that. 

I really liked how you explained up there too how your system was losing control, and how you got to regain some of that. I so hope mine stablisises soon at least somewhat. 

It's difficult isn't it, just being at the whim of your body that is malfunctioning like this! Must remain strong though, and keep on keeping on. 

@Pistol oh, I didn't realise that was still syncope. Thanks for letting me know! I have that happen a lot - where I will collapse but still have a small amount of awareness, but when looking back, it's like I have memory loss on the event and can't remember it? If that makes sense? Thanks so much for your well wishes! 

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