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Anyone else with advanced CAN?
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?
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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/.
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/.
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2 Reactions@johnbishop
Thank you for the links
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2 ReactionsI have CAN. I see an electrophysiologist. IVIG Panzyga works. My bradycardia/tachycardia and blood pressure problems along with pericardial effusion has gotten better along with my EKG. I am not having as many arrhythmias. You can’t have an ICD pacemaker/defibrillator because your nerves in your heart do not work right.
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2 Reactions@artemis1886 ...thank you so much for responding. I will research what you have said. Good luck with yours...prayers to you