Urkittenme

Introduction and a possibly useful tip!?!

7 posts in this topic

Let me start off with something that has helped me tremendously since I discovered it! I have really bad migraines. I found an app that tunes out the blue light to your phone and tones everything red. It's much more soothing and allows me to be able to look at my phone when I have a headache.  Before, I would turn the brightness all the way down, but that is also straining to the eyes. The app is meant for helping your eyes adjust and night so you can get to sleep easier, but I like to leave the app running most of the time. No significant battery loss.

The app is called Twilight, and it's free.

My name is Morgan, and up until recently I thought I had anxiety. It seemed as though every time I would get out of my car and enter a building, my heart is racing so fast I can hear it, everything kinda glows, I get sweaty and dizzy. Most of the time when I stand up and start walking, I have to stop while I regain my vision, sometimes I have to grab a wall or drop to the floor if I feel it has gone too far and I could faint. I have fainted probably 3 times, once at work. Only recently I invested in a wrist blood pressure tester, as I suspect my boyfriend's BP is a little high and I wanted to moniter it. When resting, my blood pressure is usually 100-110/70ish, with a heart rate of 70. When I tested upon standing, the results change to 130/50 with a heart rate of 130.

I plan to see a doctor to hopefully get some answers,  I was hoping maybe someone here can point me in the right direction as far as what kind of specialist to see? 

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Welcome and thank you for sharing that tip.

DINET maintains a list of specialists.  If you have not looked at this yet it might be useful to you:

http://www.dinet.org/physicians/

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Thank you for your reply :)

I have an appointment tomorrow with an M.D., who will hopefully refer me to a cardiologist. 

After some investigation, it seems as though my case may be hyperandrenergic... does this look relevant to this form of PoTS? 

Sitting: BP 112/57 HR 72 

Standing: BP 144/107 hr 122

 

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I am not trying to ask for a diagnosis, just hoping I am on the right track or if someone here experiences something similar...thanks so much for reading.

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POTS is defined by change in hr, 30 bpm or more, on standing.  Your numbers reflect that so it certainly should be investigated.

Your numbers are similar to mine--my BP can increase on standing too.

You may be hyperandrenergic however increased BP does not necessarily mean that. 

I was never diagnosed more specifically than POTS.  It may or may not be necessary for you to have further diagnosis, some people do seek more info/tests/refined diagnosis, others don't.  In my case, my symptoms have been manageable after I was diagnosed and treated.

Hope your visit with the doctor get you on the right track.

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Hello, I have hyper POTS, I have very weird blood pressure as it ranges from 100/60-140/100, so yes this is something kind of common with hyper pots. Now I'm of course not a doctor but for hyper POTS a table tilt test with norepinephrine is the standard, also testing for mast cell activation syndrome, any allergies,  some times go hand in hand. And high BP is more seen in hyper pots from my understanding as typical POTS is more associated with lower blood pressure, but again, POTS is so **** all over the place it's hard to say without further testing done. 

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My specialist which i found through dinet, said the arm bp cuff is her preferred. I also have a pulse ox sensor. Take a log of readings, activities and symptoms. This helped get me through to cardiology. At first, I was only aware about my heart rate til I realized at the cardio that my bp was low and even lower after trying a beta blocker. 

Hang in there

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