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Why do I have dangerously low and dangerously high blood pressure?

Posted by larryhayes @larryhayes, Feb 14 8:16pm

What is it called and the cause, when blood pressure simultaneously goes dangerously low and dangerously high in short periods of time? This can happen 2 or 3 times a day. Dangerously high blood pressure can be brought on by simply relaxing too long (resting, reading, watching TV, etc). Dangerously low blood pressure can be brought on by being active too long (yard work, chores, exercising etc). If I am inactive too long and my BP goes too high, I can become active and it will drop. If I am active too long my BP will drop too low, I can become inactive and it will rise. I have been dealing with this for years and I have been to many doctors in this area, but no one has a clue why. Other than the BP issue I'm in good health but that is getting harder to deal with as I age.

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larryhayes | @larryhayes | Mar 21 7:19pm
In reply to @jenatsky "@larryhayes any chance that body position has anything to do with the changes you experience when..." + (show)
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@larryhayes any chance that body position has anything to do with the changes you experience when BP is low. I’m guessing your docs have performed postural hypotension studies on you? If your docs haven’t shown their concern about the fluctuation maybe you shouldn’t either?

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@jenatsky Sorry about the delay, I been crazy busy on my home. I have not noticed a relation in body position but have not really considered it, that is other than; if I'm still too long it goes too high, if I'm too active for too long it goes to low. I don't recall any of the doctor's mentioning PH or OH. For the biggest part I try not to be concerned. When I get this burning sensation to my face or a head ace (high), or get dizzy or see spots in my eyesight (low) it concerns me.

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larryhayes | @larryhayes | Mar 21 7:30pm
In reply to @penny001 "@larryhayes I have experienced these same BP extremes and have no answers as to why. After..." + (show)
Profile picture for penny001 @penny001

@larryhayes
I have experienced these same BP extremes and have no answers as to why. After many work ups, the closest we’ve come to an answer is maybe some autonomic thing. Mine is more predictable whereas if I am sitting it’s high, and if I’ lie down long enough, it goes low. The medication I’m on is not enough to make it the highs come down to normal, but it’s too much to keep the floors at a safe MAP. Although our situations are not identical, they are close enough to where I understand many of the challenges you face of trying to live life that contains such extremes.

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@penny001 hey Penny001, sorry about the reply delay. That's interesting. They do seem very similar, so I'm sure you too sometimes feel like you're a slave to your own BP. I do about 75% of the time @OK self you've been sitting, reading, relaxing, etc to long, or OK self you've been on this project, pastime, chore etc too long.

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larryhayes | @larryhayes | Mar 21 7:34pm
In reply to @jenatsky "@larryhayes what have your doctors had to say about your fluctuating BP?" + (show)
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@larryhayes what have your doctors had to say about your fluctuating BP?

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@jenatsky they still don't know why. I've had my last referral but another dead end. I'll follow up with my primary care Dr Tues the 24th

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larryhayes | @larryhayes | Mar 21 7:47pm
In reply to @tcsurvivor4 "Hi Larry, I have this as well and I was just diagnosed with Baroreflex failure. This..." + (show)
Profile picture for tcsurvivor4 @tcsurvivor4

Hi Larry,
I have this as well and I was just diagnosed with Baroreflex failure. This can happen after trauma to the head and neck such as surgery or radiation. I have metastatic thyroid cancer and had 7 weeks of radiation. My cardiologist put me in touch with this doctor at Duke here in NC. This is also related to long covid as well … dysautonomia is the general term for it. It sometimes includes gastro intestinal issues, and cardiac issues combined and I also have issues with horrible anxiety and mast cell activation syndrome where I have sensitivity to medications, smells and sounds. Your autonomic nervous system has had some damage somewhere for most who deal with this, I hope you can find some help and relief soon.
Take care,
Char

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@tcsurvivor4 That is very interesting. I had 12 weeks of radiation to the throat back around 2008. I also worked at a nuclear facility back in the 80s and 90s where I maxed out on radiation exposure a number of times. It seems I remember the number as 2000 rems. You are also not the first to mention a possible issue with my Autonomic System. thank you

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tcsurvivor4 | @tcsurvivor4 | Mar 21 11:12pm
In reply to @larryhayes "@tcsurvivor4 That is very interesting. I had 12 weeks of radiation to the throat back around..." + (show)
Profile picture for larryhayes @larryhayes

@tcsurvivor4 That is very interesting. I had 12 weeks of radiation to the throat back around 2008. I also worked at a nuclear facility back in the 80s and 90s where I maxed out on radiation exposure a number of times. It seems I remember the number as 2000 rems. You are also not the first to mention a possible issue with my Autonomic System. thank you

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@larryhayes You’re welcome. I wish you the best in finding a solution and relief soon.

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