What treatment are you receiving for Baroreceptor failure?

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.

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.

@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.

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.

@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.

I had HPV stage 4 unknown primary in 2015. Surgeries radiation chemo. Tumor wrapped around my carotid artery and jugular and vagus nerve…11 years later I am severely disabled with orthostatic hypotension along with labile and supine hypertension. I’m particularly struggling with the (unrestrained sympathetic) Hyperadrenergic flooding of norepinephrine that causes extreme anxiety and stress. I am currently working with a hypertension dr at WCM in NYC who understands the complexities of baroreflex failure however I don’t think anyone has discussed the severity of the emotional distress that occurs with this condition. I had my vagus nerve severed during radical neck dissection so I may be one in a million.

I’m on clonidine .1 mg at bedtime and now I’m getting severe rebound symptoms in early afternoon so I’m taking half clonidine twice every day as well. I’m on 3-4 grams of sodium LMNT electrolytes and fludrocortisone in AM. I’m on a roller coaster with BP but I’m also experiencing some extreme dysautonomia with temperature changes energy drops - gait problems blurred vision and chest and coat hanger pain, urinay urgency, and headaches are so tough!
It’s not just about regulating blood pressure numbers because the R-ABF involves the entire body.

@mmqc been there, done that. The roller coaster ride can be unbearable. I'm surprised that your dr has you on clonidine other than as a treatment for severe spikes. It's known for its rebound effect. Combine that with electrolytes and your swings must be substantial. I've been on 400mg Labetalol at bedtime, along with 80mg Valsartan to reduce supine hypertension. I have on hand .1mg Clonidine to treat spikes, and 5mg Midodrine along with electrolytes to treat hypotension. It's not perfect, but there has been a significant drop in hypotension events just increasing the Valsartan from 40 to 80mg. On average, 38% of readings are high with the majority coming in the morning; 35% are low throughout the day. Not ideal, but better than the rollercoaster ride I was on. A cardiologist recommended I take 0.1mg Clonidine only if 2 readings an hour apart are over 180. Considering exercise can spike one's BP, it seems reasonable for now. Since we are all different, I hope you find what works for you and consider posting the protocol here for others.

I misspoke. The significant drop was in hypertension events.