Update 120820

Been a busy couple weeks with doctor appointments. I have been lucky and have been getting really good doctors. That makes things so much easier! 

I saw the cardiologist and am now formally diagnosed with POTS. Not changing anything with my management at this point, but having the diagnosis helps. Good to know for sure what I’m dealing with and helps keep all my providers in the know.  

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Update 103020

I had my second opinion cardiology appointment. I have been diagnosed with POTS. It was a good appointment with a knowledgeable doctor. I’m glad I got the second opinion. I’m hoping that this new doctor can get me feeling better. We are focusing on diet changes first and if that doesn’t help he will consider medication. I’m glad he wasn’t eager beaver with the drugs. I’m on plenty and not looking to add more. 2 grams of sodium daily along with 4 liters of water is a bit daunting. And the caffeine is out. No real hardship there. Taking the salt as tablets because adding that much to my food is gross. It’s a crazy amount of fluid. I’m going to turn into a fish! I will continue with the compression garments, except he wants me to wear them 24/7. Not sure my skin will tolerate that, but we’ll see. I’m just glad I have a direction to move in. Hoping this will help. 

Update 102220

Sunday I passed out and was unconscious on my bathroom floor for an undetermined period of time. My blood pressure was low and my pulse elevated. So off to the ED I went. I never like being the patient, but it’s particularly bad in the ED. The focus there is so narrow (understandably) that those of us with chronic illness often have a hard time in that setting. 

But I was pleasantly surprised.  

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Autonomic Dysfunction

This is startling. Only 20% of EDS-H patient’s had normal testing for the autonomic nervous system. 80% with autonomic dysfunction (postural orthostatic tachycardia syndrome or orthostatic intolerance). That is huge.

When I think about it, this makes sense to me, but I really didn’t expect the numbers to be this high. Given that we have lax blood vessels that easily allow blood to pool in places and ways that it isn’t supposed to, it makes sense that it would be difficult for our bodies to regulate our blood pressure and pulses in different positions.

Orthostatic Intolerance and Postural Orthostatic Tachycardia Syndrome in Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome, Hypermobility Type: Neurovegetative Dysregulation or Autonomic Failure?