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Officially A Potsie


Ctat333
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I recieved my official diagnosis of POTS today from Dr. Suleman, at The Heartbeat Clinic in Dallas, TX. I meet with geneticist Dr. Wilson for my confirmation of an EDS diagnosis April 16th. Dr. Suleman is waiting on the results from my gastric emptying study to officially diagnosis me with gastroparesis as well.

We have decided to try diet and excersice modification and biofeedback first. I was told to increase my salt to 10 grams daily, and increase protein to 80 grams daily. I was aware of the salt increase, but I had no clue about the protein lol! I see Dr. Suleman again in 4 weeks, and if I am not showing signs of improvement, then we will discuss medication.

My TTT results surprised even me! My resting HR was 61 bpm, and within a minute of tilting up, my HR went to 161 and stayed in the 150s & 160s for the remainder of the test. It was torture lol.

It feels so good to know that after all these years, I was right.

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Thank you Ana. I wholeheartedly agree that I would never wish this for anyone, or myself! I'm jut happy to finally know why I've been so ill. I have been searching for a diagnosis for 6 years now, with symptoms going on 12 years. I finally have a little peace of mind. Hopefully now Incan begin my journey on the path to healing :)

Wishing you many good days!

~ Alison ~

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congrats on getting a dx! I know how tough that is. My daughter's heart rate was just like yours until she started treatment. I hope they find the right mix of things to help you. She also was instructed to try salt and fluids ( not the protein though). Now she sees a nutritionist regularly who is pushing protein because she is very underweight. Good luck.

June

PS- 2 cardiologists told us decreased weight and poor nutrition play a key role in blood pressure management.

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Welcome to the club. :)

Not a great thing to have to deal with, but I completely understand how relieving it is to finally put a name to what's happening.

He suggests a high protein diet to help get the albumin level in your blood higher. This will increase your oncotic pressure and will allow you to retain more fluid in your blood vessels.

^this.

More 'stuff' in the blood (albumin is the most abundant protein in your blood), the more concentrated it becomes. Your body likes to keep the everything at a specific concentration, so it will make you retain fluid and increase blood volume to make that happen.

Side note: the brain's main source of energy is glucose, but it can survive on ketone bodies (from protein) when on a very, very low carb diet or fasting. Protein won't really factor into feeding the brain unless carbs are eliminated.

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