Lucee

I too, am a failure. I just don't do drugs well. I've failed all the treatments with Crohn's except Remicade and I guess it scares me I will fail this too. But I hold out hope there is something they can find. Thank you for responding.

Thank you for replies! I did try metoprolol but it knocked me out. The brain fog was killer and I couldn't even hold a conversation. He said the Corlanor is a miracle drug but it's not keeping my heart rate down. Honestly, I hate to disappoint him I will call Stanford today to see if they've received the referral. I am not complaining, I just hate feeling this way and wish it would go away. Having Crohn's is bad enough. Trying to keep liquids in is challenging to say the least.

I had a holter monitor with an average resting rate of 120. Had tilt table and my BP goes from 120/80 to 72/47 fast and heart races to 157. Docs put me on Midodrine and Corlanor, which just cost me over 300.00 because my insurance didn't approve the Corlanor. I've been taking them for about 2 weeks. Midodrine 2.5mgs 3x daily and Corlanor 5mg 3x daily. Today and yesterday my heart starts racing (120) as soon as the afternoon dose wears off. Trying to sleep is difficult. My cardiologist doesn't have the best bedside manner. Last time I saw him he just kept saying what I have is incurable. I ask what I have and he says dysautonomia. Never what type, just that it is incurable and I will spend the rests of my days on these meds. Which is fine, if they worked, but my BP is still low and my HR is too fast. He said he will refer me to Stanford in Palo Alto which is great except it's been several days with no response. My question is, are people on larger doses of Midorine and Colanor or is the fact that they are not working, just something I have to live with. His words not mine. Any ideas on what incurable dysautonomia is?