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

@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?

@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.

@larryhayes what have your doctors had to say about your fluctuating BP?

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

@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

I am having the same issues for several years and after multiple cardiac and non-cardiac testings to determine the root cause, I am having symptoms that presents like Orthostatic Hypotension and straight up Hypertension. To that end, I am bouncing from one specialist to another trying to determine what is the cause of my issues and most importantly, what needs to be done to make me feel better despite what the labs and test results may be showing! Right now, I feel the same symptoms described to start this chat and they are happening more frequently and lasting longer throughout the day as I get older ( I am 65). This condition is limiting my ability to do relatively light chores around the house, exercise, play a round of golf, etc. Right now I am being treated with Midodrine and Amlodipine depending on whether my BP is low or high. Feels like a game of Russian roulette. I have exhausted all relevant cardiac testing and all possible cardiac issues have been ruled out, so I am now being referred to Neurology and Endocrinology to provide their insights

I am having the same issues for several years and after multiple cardiac and non-cardiac testings to determine the root cause, I am having symptoms that presents like Orthostatic Hypotension and straight up Hypertension. To that end, I am bouncing from one specialist to another trying to determine what is the cause of my issues and most importantly, what needs to be done to make me feel better despite what the labs and test results may be showing! Right now, I feel the same symptoms described to start this chat and they are happening more frequently and lasting longer throughout the day as I get older ( I am 65). This condition is limiting my ability to do relatively light chores around the house, exercise, play a round of golf, etc. Right now I am being treated with Midodrine and Amlodipine depending on whether my BP is low or high. Feels like a game of Russian roulette. I have exhausted all relevant cardiac testing and all possible cardiac issues have been ruled out, so I am now being referred to Neurology and Endocrinology to provide their insights

Hi @larryhayes, I moved your question about fluctuating blood pressure to the Heart & Blood Health Support Group (https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/) where you will be able to connect with others discussion heart-related issues.

If you are looking for expert answers from Mayo Clinic specialists, you can submit an appointment request using this online form: https://mayocl.in/1mtmR63

It appears that the specialists you've seen are not concerned with the fluctuations in blood pressure that you experience. However, you describe the readings as "dangerous." That must be worrisome. What is dangerously low and dangerously high in your case? How long do you have to be inactive or active to change the readings? Do you feel symptoms or are you using a home monitor to measure your blood pressure?