Orthostatic Hypertension: Have you found answers?

Posted by amoreenap @amoreenap, Dec 1, 2021

Hi everyone. I am wondering if anyone else is going through this as well.
I am 26 years old and when i was 24, I got a blood pressure reading of 140/104. Prior to this I had blood pressure ranging from 100/60 to 110/70. I started to take it at home more often and noticed I hadlow to normal blood pressure when laying and sitting and HIGH blood pressure when I stand up.

When I stand my BP can rise as high as 175/125.
I sit back down for 10 mins and it drops back down.
While sleeping my bp can go as low as 80/40. (per 24 hr BP monitor)

I have been to countless doctors.. nephrology and hypertension, neurology, endocrinology, cardiology. We have ruled out rare things like pheocromocytoma (although i do have slightly elevated metanephrines) but have had a full body scan and no pheo-para has been found. I sometimes also have elevated heart rate (as high as 160 when standing which is typical for POTs.)

I was recently diagnosed with the hyperadrenergic subtype of POTS..and they want to blame my symptoms on that. But something still doesn't seem right.

I will be traveling from New England in Jan/Feb for the mayo clinic florida campus.
I am hoping to get answers, because right now it feels hopeless.

has anyone here had similar symptoms and have you had luck finding answers?

Thank you 🙂

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

Amanda Burnett | @amandaa | Dec 1, 2021

Hi @amoreenap and welcome to Mayo Clinic Connect. You will notice that I also added your post to the Heart and Blood Health Group so you can connect with members that have dealt with similar issues.
You can find the group here: https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/

There is an article in the American Heart Association Journal that you might like to read : Orthostatic Hypertension - Critical Appraisal of an Overlooked Condition: https://www.ahajournals.org/doi/full/10.1161/HYPERTENSIONAHA.120.14340#d3e269

There is also a couple of discussions here on Connect that you might like to take a look at.
PAF: https://connect.mayoclinic.org/discussion/is-there-anyone-else-out-there-with-pure-autonomic-system-failure/?pg=2#comment-57625

Dysautonomia/Syncope/POTS: https://connect.mayoclinic.org/discussion/dysautonomiasyncope/

This is the heart rhythm group https://connect.mayoclinic.org/group/heart-rhythm-conditions/?pg=2

So you are traveling to Florida in a couple months? Which doctors have you been set up with?

amoreenap | @amoreenap | Dec 1, 2021

In reply to @amandaa "Hi @amoreenap and welcome to Mayo Clinic Connect. You will notice that I also added your..." + (show)

Hi thanks!
I have been set up with Dr. Halkar and Dr. Dudenkov!

Amanda Burnett | @amandaa | Dec 1, 2021

In reply to @amoreenap "Hi thanks! I have been set up with Dr. Halkar and Dr. Dudenkov!" + (show)

Oh ok! So you are seeing GIM and Executive Health. You are in very good hands! I hope to hear an update when you see them.

debphx2021 | @debphx2021 | Dec 10, 2021

I started having symptoms in 1978, syncope changed my life. Finally got POTS dx. Hydration helped me. Recumbent exercise bike and walking helped too. New small fiber neuropathy diagnosis which could be the explanation behind the POTS too. Also had chronic fatigue, falling, balance etc. eat healthy, don’t drink. Take BP Meds daily. Doing much better but still agree with you that there still seems to be something else. If I get more I will share info.

Colleen Young, Connect Director | @colleenyoung | Dec 15, 2021

In reply to @debphx2021 "I started having symptoms in 1978, syncope changed my life. Finally got POTS dx. Hydration helped..." + (show)

@debphx2021 your story and symptoms remind me of @rwinney's story. I like your lifestyle approach with hydration, exercise and balanced eating. Despite doing much better, you mention there still seems to be something. Can you elaborate?

Rachel, Volunteer Mentor | @rwinney | Dec 16, 2021

In reply to @debphx2021 "I started having symptoms in 1978, syncope changed my life. Finally got POTS dx. Hydration helped..." + (show)

@debphx2021 Hello. It sounds like your doing a pretty good job at controlling symptoms. When such a plethora of symptoms present, it does become confusing.

I live with Central Sensitization Syndrome (CSS) which is an umbrella that can encompass many chronic pain and sensory symptoms.

Here is a video on CSS in case your interested in learning about it:

https://youtu.be/8defN4iIbho

Have you learned any more about your condition since you posted last?

imasa | @imasa | Dec 29, 2023

Hey @amoreenap Any results? Any direction that helped? I having the same problem. Thank you to anyone that can help. Looking for any direction at this point.

Colleen Young, Connect Director | @colleenyoung | Jan 7 7:27pm

In reply to @imasa "Hey @amoreenap Any results? Any direction that helped? I having the same problem. Thank you to..." + (show)

@imasa, welcome. Sorry to hear that you are also dealing with orthostatic hypotension. Is this a new diagnosis for you? What specialists have you seen?