What treatment are you receiving for Baroreceptor failure?

Posted by 56tburd @56tburd, Jun 20, 2025

I've mentioned here before that a result of neck radiation and/or surgery can result in damage to the baroreceptors in your neck. These are the regulators of you blood pressure (BP). It's been a challenge to find a solution to the problem over the years. I experienced more uncomfortable symptoms from hypotension than hypertension, but the latter is what causes the damage.

I only became aware of the problem a few years ago when my BP spiked. Until then, it had been pretty normal. That is when they discovered heart damage and a dilated upper aorta. Had I known to watch for signs, I might have caught it earlier. Trying to "fix" it has been a challenge. One cardiologist told me I' just have to learn to live with it. Another told me I wasn't his bread and butter. My PCP does what she can, but I don't think she is completely up to speed on what works.

Thus, the question I have is what are you receiving for care in this regard. The studies I've read keep mentioning Clonidine as an effective treatment in reducing the number of episodes. Is there anything else you can offer? Thanks!

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What I forgot to mention is that my daytime BP has been relatively stable. It's the nocturnal hypertension that has gotten out of control.

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I've been struggling with this the last few years as well. I had tonsil cancer 8 years ago. I've been on and off a lot of medications, but Clonidine is what they have me on now. Just this week they switched me to a Clonidine transdermal patch. So far it doesn't seem to be working so I'm going to have to call the doctor back. I haven't really found much else to help except for marijuana which I will use in the afternoon/evening to bring it down.

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Profile picture for jdawgcurtis @jdawgcurtis

I've been struggling with this the last few years as well. I had tonsil cancer 8 years ago. I've been on and off a lot of medications, but Clonidine is what they have me on now. Just this week they switched me to a Clonidine transdermal patch. So far it doesn't seem to be working so I'm going to have to call the doctor back. I haven't really found much else to help except for marijuana which I will use in the afternoon/evening to bring it down.

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@jdawgcurtis the current protocol I'm on is 400 mg Labetalol in the evening and 100mg in the early morning to reduce the onset of hypertension. Because mine is one of those cases that swings excessively both ways, it's more difficult to treat. I use 5 mg Midodrine up to 4x/day to offset the hypotension. Once I got off of the 24-hour BP meds, the fluctuations eased up a bit. I take 0.05-0.1 mg Clonidine to treat BP readings over 165. The new doctor I see came up with this protocol during our first meeting, and subsequent reviews of research verified his conclusions. Research discourages using Clonidine for control due to its rebound effects. There is no expectations that this will control my BP, rather it is a matter of quality of life. It is important that you are monitored for hypertension side effects. Your risk of complications is increased as time goes on. It was an EKG that first made me aware that I was experiencing a problem, and it appears more issues have developed. I will mention that Google Scholar is a great resource for the latest research, another bit of information that the new doctor passed along. Good luck.

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My husband was diagnosed with baroreflex failure last year about this time. We live in a major Midwest city and could not find a doctor that could help him. Cardiologist said his issues weren’t caused by heart. Neurologist couldn’t figure a thing out.
Found a report on long term side effects of throat cancer. ( My husband finished treatment in 2011). One of the authors of the report was an autonomic specialist in Indy. We were able to get in to see him and my husband was diagnosed with Baroreflex failure. That doctor put him on 100 mg of Droxidopa to keep bp from going to low during the day and Nefedipine at night to prevent it from going to high.
After seeing doctor in Indy we got a second opinion at Mayo in. Minnesota. They confirmed diagnosis although didn’t agree on meds. But, they also said if it was working they said to stay on that. There are days he may have to take an additional Droxidopa, but all in all he’s doing pretty good now.

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Profile picture for thare @thare

My husband was diagnosed with baroreflex failure last year about this time. We live in a major Midwest city and could not find a doctor that could help him. Cardiologist said his issues weren’t caused by heart. Neurologist couldn’t figure a thing out.
Found a report on long term side effects of throat cancer. ( My husband finished treatment in 2011). One of the authors of the report was an autonomic specialist in Indy. We were able to get in to see him and my husband was diagnosed with Baroreflex failure. That doctor put him on 100 mg of Droxidopa to keep bp from going to low during the day and Nefedipine at night to prevent it from going to high.
After seeing doctor in Indy we got a second opinion at Mayo in. Minnesota. They confirmed diagnosis although didn’t agree on meds. But, they also said if it was working they said to stay on that. There are days he may have to take an additional Droxidopa, but all in all he’s doing pretty good now.

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@thare it took me several years and about $5,000 dollars to get a diagnosis, only to be told by a cardiologist that I'd have to learn to live with it. Well, he wasn't far from being right. There is no cure, and it can get worse, so the primary concern is treating for quality of life. If he has a protocol that works, that's a good thing. It is also good that he is seeing a autonomic specialist. Research recommends that we have all the specialists we need for the symptoms we are experiencing. I recently read research that suggested the problem stems from blood vessels becoming too rigid due to radiation scarring for the baroreceptors to detect BP changes. For more information, you might want to check out Google Scholar for the latest research. I hope he continues to manage it successfully.

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