Baroreflex Failure

[Scout]

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! 

 

 

[p8d]

@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.

[Scout]

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? 

[Pistol]

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. 

[PJPW]

Following this for information

 

[Scout]

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.

😊

[MikeO]

Found this thread interesting. I just messaged my Cardiologist with my latest BP's as i am well over goal while i am up and about. Spikes have been High 180/115. Not sure what he is going to do as i can not tolerate the usual antihypertensive drugs 

[merkat30]

I have this so far nothing has helped . Made worse yes clonidine was evil I am still not recovered from that horrible drug .

[CJ65]

Hi @Scout Baroreflexes buffer our blood pressure preventing wide variations in BP. Baroreflex failure can occur after neck surgery like carotid endarterectomy, radical neck dissection or radiation. Certain genetic conditions and brain stem stroke can also cause it. It is characterized by severe range blood pressures and lability, tachycardia. They can tell definitively if you have it during autonomic testing. David Robertson and Italo Biaggioni from Vanderbilt are experts.   They wrote a great article called “The Four Faces of Baroreflex Failure” which is available free on the American Heart Assn website. Baroreflex impairment is common  in autonomic disorders but true failure is rare. I have baroreflex impairment from damage to my  right glossopharyngeal nerve (CNIX) during cervical spine surgery. This nerve ennervates the baroreceptors in the carotid sinus and and the aortic arch. The vagus nerve as you mentioned also plays a role. The message in my case, from baroreceptors to brain is interrupted (afferent pathway) so my brain sends me into sympathetic overdrive, BP extremes etc. I don’t have full blown failure because my left side works but it’s still a bear to control and i can have pressures in 240s/120s but fortunately with alpha blockers, beta blockers and calcium channel blockers (ALL the blockers haha) I have better control.  Another article worth checking out is Baroreflex Dysfunction by Kaufmann et al in The New England Journal of Medicine January 2020. I hope that you don’t have true failure and I hope that you find some relief soon. 
 

**oy my brain, I just realized I replied to an old thread!**

Edited September 11, 2021 by CJ65

[MikeO]

@CJ65Nice write up!

[CJ65]

@MikeOthanks! 

[Scout]

On 9/11/2021 at 2:41 PM, CJ65 said:

Hi @Scout Baroreflexes buffer our blood pressure preventing wide variations in BP. Baroreflex failure can occur after neck surgery like carotid endarterectomy, radical neck dissection or radiation. Certain genetic conditions and brain stem stroke can also cause it. It is characterized by severe range blood pressures and lability, tachycardia. They can tell definitively if you have it during autonomic testing. David Robertson and Italo Biaggioni from Vanderbilt are experts.   They wrote a great article called “The Four Faces of Baroreflex Failure” which is available free on the American Heart Assn website. Baroreflex impairment is common  in autonomic disorders but true failure is rare. I have baroreflex impairment from damage to my  right glossopharyngeal nerve (CNIX) during cervical spine surgery. This nerve ennervates the baroreceptors in the carotid sinus and and the aortic arch. The vagus nerve as you mentioned also plays a role. The message in my case, from baroreceptors to brain is interrupted (afferent pathway) so my brain sends me into sympathetic overdrive, BP extremes etc. I don’t have full blown failure because my left side works but it’s still a bear to control and i can have pressures in 240s/120s but fortunately with alpha blockers, beta blockers and calcium channel blockers (ALL the blockers haha) I have better control.  Another article worth checking out is Baroreflex Dysfunction by Kaufmann et al in The New England Journal of Medicine January 2020. I hope that you don’t have true failure and I hope that you find some relief soon. 
 

**oy my brain, I just realized I replied to an old thread!**

Thank you so much for this @CJ65

Very helpful! It's strange because I have no neck injuries etc that I know of, and yet I have these surges which showed up in my autonomic testing. Either very low BP, or suddenly very high BP, originating from sympathetic overdrive ("autonomic dysreflexia" is written on my file)

I didn't respond well to beta-blockers, so treatment has been tricky.

 

[Pistol]

1 hour ago, Scout said:

I didn't respond well to beta-blockers, so treatment has been tricky.

@Scout - has your doc ever considered a calcium channel blocker? Or guanfacine ( Tenex? ). These meds have been helpful in controlling my labile BP's. 

[MikeO]

4 hours ago, Scout said:

autonomic dysreflexia

This is usually associated will an injury or damage to the spinal cord. It also can be caused by Side effects of some medicines or other factors. Like you i am very sensitive to meds so controlling my liable bp has been problematic as well. I have done well with a Beta blocker but ACE and ARB's and channel blockers (causes swelling) are out of the question for me as i do not tolerate them well.

For now my care team just has me tracking my bp's and i have to notify them when i am over goal more than 50% of the time.

I did bring up guanfacine with my Doc's, they are not willing to even trial it. Hopefully you are seeing a neurologist that has experience with the drug. 

 

[CJ65]

On 9/16/2021 at 1:21 AM, Pistol said:

@Scout - has your doc ever considered a calcium channel blocker? Or guanfacine ( Tenex? ). These meds have been helpful in controlling my labile BP's. 

@Scout I think many of us have some degree of baroreflex impairment so you don’t need to have the neck or genetic component, but for true failure, those are likely culprits. Labile pressures are so hard to get a handle on, I totally agree with @Pistol about trying a CCB I just started Diltiazem in addition to Guanfacine and propranolol and the CCB is making a big difference for both HR and BP. 

[Pistol]

@CJBI too am on Diltiazem, and it has been sooo helpful! I used to have a lot of problems with vasoconstriction, ( raynauds syndrome, prinzmetal angina ) and my BP would either be high and cause seizures from no cerebral circulation, or it would suddenly drop and I would pass out. Since the Diltiazem ( and IV fluids twice a week ) this has improved. I also am on Carvelidol. My BP's now consistantly run in the 100/60 range.

[CJ65]

@Pistolthat is so encouraging to hear how you’ve improved! Infusions don’t help me unfortunately. Did you wean Guanfacine after starting Diltiazem? I’m so dang tired on 1mg Guanfacine am and 2 mg pm, it’s hard to function. Now that Diltiazem is helping, I would LOVE to wean Guanfacine but I’m afraid when I remember the sympathetic overdrive insanity before I started taking it. 

[Pistol]

7 hours ago, CJ65 said:

Did you wean Guanfacine after starting Diltiazem?

I was on both for a while, and I only ever took guanfacine 0.5 mg twice a day. Once the infusions started showing lasting results I was able to completely go off the guanfacine ( over 3 weeks ) and decrease both Diltiazem and Carvelidol. Weaning off guanfacine can be tricky - I did well, but my sister was on the ER version and it took her forever to stop it.