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Be Still

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I have POTS.

It took 47 years to find out, as I was likely born with it.

I have many sx of hyperadrenergic and will have a catecholamines study to confirm; my 1995 TTT is unclear on this.

Dr Grubb?s wonderful manner cannot be overstated and it is very reassuring to have the explanations he gave of both my condition and why medical science was clueless most of my life. I also think very highly of Bev, his NP, who overflows with empathy and helpfulness. The day was long and wearying, but well worth it. I liked Dr. G?s laid back style, instant understanding of how my constellation of sx might be helped and his evident, deep concern. He often refers to his own health struggles in a way that makes one feel he can truly relate, and gives him an unfair advantage when I want to protest a recommendation!

So far, I was prescribed labetalol (BB), Cerefolin (brain fog is a huge issue) and a sleep aid (waiting for pre-approval.) I?ve struggled with some sx from the new meds, but nothing unmanageable. I have been urged to recondition, swimming was suggested. Dr. G also recommended counseling since a chronic illness is hard on oneself and also taxes the family.


Apparently, I can stop kicking myself for not functioning better, and I can finally, finally, finally, take off my medical detective hat.

I guess I?m just visiting this planet. On Planet POTS, where I was born, the gravity was different. :)

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Guest tearose

Welcome back!

born with it eh? Don't you wish your parents could have "given" you a present of a different sort? :)

Well, I am glad you now have a dx and that you are already treating it.

It is also wonderful that you have found yourself a doctor that you have confidence and help from! Finding and developing a medical management team is half the battle!

Thank you for sharing your good news.


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Congratulations on receiving a diagnosis but certainly not "getting" the diagnosis. I think most of us can relate to the frustration of chasing explanations for years without knowing what is wrong. Dr. Grubb sounds wonderful and I am glad you have been seen and diagnosed. Here's to even more understanding and sx management in your future!


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Thank you for your responses, I appreciate that you care. I'm grateful for this site and your compassion and concern. Thanks for being there.

It has been a long road, I'm glad I finally have one answer, and some empathetic buddies to walk with down the road.

So, here's a toast to you, my walking mates:

A toast to your coffin.

May it be made of 100 year old oak.

And may we plant the tree together, tomorrow.


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glad that your visit was a good one and hope that the new treatment plan brings relief....

B) melissa

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