Anyone else with advanced CAN?

Posted by itiswhatitis @itiswhatitis, 2 days ago

I'm looking for anyone else with advanced cardiac autonomic neuropathy and any advice on treatment. Do vagus nerve stimulators work? I have severe blood pressure instability, severe digestive issues...the entire system is failing and I've had 3 feeding tubes and now have removed entirely for quality of life sake. My body cannot self regulate it's temp. I am in a life threatening situation with my blood pressure as it goes from 220/120 to 58/35. I just don't know that anything can be done anymore and have chosen to have a DNR. But then talk of vagus nerve stimulator came up but I would have to come to Mayo or similar place and transportation is extremely difficult. Anyone with advice?

Interested in more discussions like this? Go to the Neuropathy Support Group.

John, Volunteer Mentor | @johnbishop | 2 days ago

Hello @itiswhatitis, Hoping you get some answers from members with experience. @slkanowitz, @artemis1886, and others have discussed cardiac autonomic neuropathy in other discussions and may have some thoughts or experience to share. Here is a search link that lists discussions and comments from members on cardiac autonomic neuropathy - https://connect.mayoclinic.org/search/discussions/?search=cardiac%20autonomic%20neuropathy.

There are also a few comments on vegas nerve stimulators that might be helpful. Here is a link to the comments - https://connect.mayoclinic.org/search/?search=vegas+nerve+stimulator.