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RCVS


Terrib

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Hi!  I am new here and so glad I found this!  I was recently diagnosed with RCVS and had the scariest last couple of months.  I want to go into my story but want to make sure I am at right place?  Trying to navigate this site but so glad to find info on this!  Thanks for any advice on how to use well!

Happy Friday!

Terrib. 🤗

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Hello @Terrib - welcome to the forum! By RCVS - do you mean reversible cerebral vasoconstriction syndrome? I am not familiar with this disorder but after scanning through a few sites I can see that the symptoms can be similar to those we experience from dysautonomia. If you don;t mind - why don't you tell us a bit about your story, so we can see how we relate and if there are things we can learn from each other?

I have Hyperadrenergic POTS, which causes vasoconstriction all over my body, including cerebral loss of circulation, from excessive adrenaline levels. Adrenaline is a vasoconstrictor. When the vessels to my brain constrict so much that there is no circulation I take autonomic seizures. I also have Raynauds disease and Prinz metal angina - both caused by too much vasoconstriction. So as you see - it sounds like some symptoms could be similar! 

I am looking forward to hearing more from you, and I am glad you found us. 

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