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Scout

Baroreflex Failure

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Does anyone know much about baroreflex failure? 

It's come onto my radar a few times, especially most recently, when I saw a photocopy of the notes my autonomic specialist wrote in my file. 

She wrote that it appears I have either "autonomic dysreflexia", or, baroreflex failure. 

I wish she'd said that to me at our appointment. All she said was I have an "unusual type of POTS" and highly unstable BP/HR. 

As far as I was aware, autonomic dysreflexia more commonly occurs in people with spinal injuries?

I know baroreflex failure on the other hand can occur for many different reasons, often due to damage of the vagal nerve, or carotid arteries. Sometimes with an unknown cause. 

Just wondering if anyone had any experience with this? 

Cheers! 

 

 

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@Scoutis your Dr an autonomic specialist?  I am asking because I think if she isn’t then she’s looking at options to describe your symptoms.  Baroreflex failure, as defined by Vandy, includes “Heart rate that does not respond to medications intended to improve it.”  Do you respond to beta blockers or corlanor?  I think by loose definition all hyper pots patients have some baroreflex failure or certainly dysfunction.  I have a crazy gastropressor reflex now.  If I drink too much (>8 ozs) of fluid my BP soars.  Other times my BP is low-heat, humidity, not enough fluids, mornings etc. what is your gastropressor response to fluids?  My BP rises in about 10 minutes and stays elevated for about an hour +.   A good article on baroreflex failure is here https://www.nejm.org/doi/full/10.1056/NEJM199311113292003. I have hyper POTS with high catecholamines.  I tried clonidine and methyldopa for high norepinephrine but methyldopa didn’t help my BP and clonidine caused bad rebound hypertension.  Thanks to @PistolI now take guanfacine for this and Coreg for BP control.  I also take corlanor for HR control. It took me almost a year to figure out the gastropressor response I was having and get on the best meds and I did this on my own.  My cardiologist just says yeah, that makes sense your ANS is screwed up and prescribes meds although I had to fight for the guanfacine.  He had never used it before in twenty years of practice.  I know drink a fair amount of fluids (40 ozs) in the first few hours in the morning and then slow way down during the day.  8ozs every couple of hours.  We’re all different so experiments on ourselves sometimes is the only answer.  Good luck and please let us know how you are doing.

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Thanks for your reply, @p8d.

My specialist is an autonomic specialist, indeed. She's head of the neuro department at a big hospital here, which has a special autonomic clinic, and has people travel to see her from all over the country. 

I don't respond well to beta-blockers,  so far, sadly. Metoprolol seemed to make me worse, and also gave me horrible insomnia and nightmares. 

My cardiologist said we'd discuss Ivabradine next appointment. I see him in three weeks. That was the earliest I could get in to see him. 

If I don't take the Ivabradine, I'll be trying Calcium Channel Blockers, which I am told will help with the BP spikes too. Fingers crossed, at least! I tend to get a lot of side effects from meds which is irritating. Very sensitive to them. The BP surges are a big concern for me. 

Interestingly, fluids drop my BP. I tend to get less "surges" when I am drinking a lot of fluid, though still get some. I make myself drink a litre in the morning, to start off the day.

I'm interested in your experience with clonidine. Did you immediately get high BP when taking it, or only get the rebound hypertension when withdrawing? 

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8 hours ago, Scout said:

I'll be trying Calcium Channel Blockers, which I am told will help with the BP spikes too.

I am on Diltiazem, which is a CCB, and it really helped my BP surges. 

 

8 hours ago, Scout said:

Interestingly, fluids drop my BP.

IV fluids immediately bring my BP down, which is opposite of what is supposed to happen. I used to arrive in the hospital with BP 150's/ 100's and after the first 15 minutes of IV fluids my BP dropped to 110/70 - ish. This happened all of the time and all my symptoms improved too. Now I no longer have to wait until I get bad to get fluids - I get them weekly and rarely get hypertensive anymore. 

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22 hours ago, Scout said:

Thanks for your reply, @p8d.

My specialist is an autonomic specialist, indeed. She's head of the neuro department at a big hospital here, which has a special autonomic clinic, and has people travel to see her from all over the country. 

I don't respond well to beta-blockers,  so far, sadly. Metoprolol seemed to make me worse, and also gave me horrible insomnia and nightmares. 

My cardiologist said we'd discuss Ivabradine next appointment. I see him in three weeks. That was the earliest I could get in to see him. 

If I don't take the Ivabradine, I'll be trying Calcium Channel Blockers, which I am told will help with the BP spikes too. Fingers crossed, at least! I tend to get a lot of side effects from meds which is irritating. Very sensitive to them. The BP surges are a big concern for me. 

Interestingly, fluids drop my BP. I tend to get less "surges" when I am drinking a lot of fluid, though still get some. I make myself drink a litre in the morning, to start off the day.

I'm interested in your experience with clonidine. Did you immediately get high BP when taking it, or only get the rebound hypertension when withdrawing? 

Following this for information

 

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I'll be sure to update this thread after I see both my cardiologist and autonomic specialist, hopefully with some answers that may help others, too, in similar situations.

😊

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