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Profile picture for 56tburd @56tburd

Welcome to the club no one wants to join. I'm 20 years out from my treatment and discovered I had undiagnosed baroreflex failure about 8 years ago. It has been a very unpleasant journey trying to find the correct treatment. Drugs that lower the BP can trigger hypotension, which can be extremely rough to endure. Unfortunately, there is no cure, and quality of life is the goal if you experience both hypertension and hypotension. Unfortunately, I often experience hypertension while sleeping, and the doctor visits didn't catch this, leading to some damage to organs. After much experimenting, the following protocol has given me the best results to date: 100mg Labetalol in the early AM, 400mg before bed, and 0.05mg to .1mg of Clonidine as needed for a systolic of >165. If I'm careful about how much Clonidine I administer, I can avoid the side effects of hypotension. I have 5mg Midodrine on hand when hypotension hits, up to 4x daily. The downside is that hypertension does the most damage. It is recommended that you have an autonomic doctor on your team. A search for baroreceptor failure on Google Scholar will provide a lot of information. You've already found Mayo's webpage. Good luck!

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Replies to "Welcome to the club no one wants to join. I'm 20 years out from my treatment..."

@56tburd
Thank you for your response I really appreciate it. I will get with doctors and try to find an Autonomic Doctor. I will also look at google scholar for information. Thanks!