I met with my cardiologist on Monday. I was determined to listen to him and that he would listen to me. The drug I am taking to lower my heart rate did work, but at the expense of my brain. I couldn't think. I would lose common words mid-sentence. Like, "Hey, can you get that that that.... thingy off the table?" I was referring to a plate thought I couldn't find the right word for it. Other times, I might say something like, "Hey, can you get that that that... pipe off the table?" When I mean plate. Weirdest damn symptoms in the world and embarrassing too. Couple those symptoms with passing out in the laundry basket and you've got kids trying to move you into their home.
All that changed on Tuesday when I was introduced to Corlanor, a medication used to treat heart failure. I took it on Tuesday and didn't notice much of a difference. Yesterday, pretty much the same and maybe I was a tad worse. Today, I took the full dose and it was like a light when on over my head. "Hello world!" I screamed. "I'm back!"
Corlanor is off label in the US, but it is used in Canada and the UK for dysautonomic disease. Up to 50% of Crohn's patients will develop an autonomic disorder, yet when I asked my Crohn's doc two weeks ago if the two were related, he knew nothing about it.
I talked with my case manager who said, "You sound better than you have in months!" I agreed. Now my HR is still high and my BP is still low, but still, this drug opened up a pathway into my brain that had been closed since November of last year. Some call it oxygen, but I don't really know. I'm sure my cardiologist will explain.
Only problem is it wears off in 4 hours. Which is about now. I figure if I can learn how to treat myself right and get the right medication, I might be able to buy myself more time on this planet. After all, I've got books to write.
Lest you have found this blog on accident and you have dysautonomic issues, click here. They have some wonderful information available that will help straighten the dysautonomic road.
All that changed on Tuesday when I was introduced to Corlanor, a medication used to treat heart failure. I took it on Tuesday and didn't notice much of a difference. Yesterday, pretty much the same and maybe I was a tad worse. Today, I took the full dose and it was like a light when on over my head. "Hello world!" I screamed. "I'm back!"
Corlanor is off label in the US, but it is used in Canada and the UK for dysautonomic disease. Up to 50% of Crohn's patients will develop an autonomic disorder, yet when I asked my Crohn's doc two weeks ago if the two were related, he knew nothing about it.
I talked with my case manager who said, "You sound better than you have in months!" I agreed. Now my HR is still high and my BP is still low, but still, this drug opened up a pathway into my brain that had been closed since November of last year. Some call it oxygen, but I don't really know. I'm sure my cardiologist will explain.
Only problem is it wears off in 4 hours. Which is about now. I figure if I can learn how to treat myself right and get the right medication, I might be able to buy myself more time on this planet. After all, I've got books to write.
Lest you have found this blog on accident and you have dysautonomic issues, click here. They have some wonderful information available that will help straighten the dysautonomic road.
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