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Anyone with baroreflex failure?

Posted by vicki58 @vicki58, May 15 8:44am

After many years of testing, I was diagnosed with something rare called baroreflex failure. The Baroreflex receptors located in my neck are not properly communicating with the nerves that control my heart and blood vessels
My blood pressure can go sky high are drop low kind of crazily with exertion or stress.
I also get weakness in my upper arms and thighs with the least amount of exertion. For example, I can put maybe 3 dishes away in an upper cupboard. Before my arm is so tired, I have to let it rest. I can just about walk from my house to my garage without having to stop and catch my breath. I get wiped out from a shower and out of breath after getting dressed. It's very disconcerting. I'm not able to find anyone else with this. And my doctor can only tell me, he knows what's happening. But he doesn't know why. i've done so many tests. I'm looking for some support

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vicki58 | @vicki58 | May 17 10:08am

Thanks so much for replying. Ive felt so alone in this! I try my hardest to communicate with each doctor what the other docs are prescribing and why, go over my med list at every visit, but at times its like each specialist wants THEIR thing addressed! And Im often wondering which med might be causing which symptom, so I google a lot....

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spibill | @spibill | May 19 7:36am
In reply to @bmfoster "@spibill This sounds like autonomic nervous system failure with orthostatic hypotension. My blood pressure drops to..." + (show)
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@spibill
This sounds like autonomic nervous system failure with orthostatic hypotension. My blood pressure drops to as low as 65 systolic in the heat while standing causing me to sit down and get out of the heat to avoid passing out. At night when supine - the BP can rise quite high as it no longer depends as much on the autonomic nervous system to adjust HR and blood vessel diameter to maintain blood flow to the head. My cardiologist stopped my Norvasc (lowers BP) and put me on Midodrine ( raises BP) which has really helped maintain my BP, but I must stay hydrated and avoid intense heat or suffer the consequences.
Mestinon is generally used for Myasthenia Gravis - do you have this diagnosis?

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@bmfoster No to myasthenia gravis. My neurologist started to put me on midodrine then changed his mind to go off label with mestinon as it has a blood pressure raising effect during the day when bp bottoms out while losartan lowers it at night. Timing is everything. I am glad he thought of it. Even in heat and standing I never get below 80/50 although I am grossly weak when it is that low.

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bmfoster | @bmfoster | May 19 4:06pm
In reply to @spibill "@bmfoster No to myasthenia gravis. My neurologist started to put me on midodrine then changed his..." + (show)
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@bmfoster No to myasthenia gravis. My neurologist started to put me on midodrine then changed his mind to go off label with mestinon as it has a blood pressure raising effect during the day when bp bottoms out while losartan lowers it at night. Timing is everything. I am glad he thought of it. Even in heat and standing I never get below 80/50 although I am grossly weak when it is that low.

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@spibill
Same here - I have not passed out, but when the pressure is down in the 80's it is quite debilitating. My cardiologist stopped my Norvasc (which can lower BP) and started the Midodrine. It allows me to function in the heat for short periods as long as I stay hydrated and avoid prolonged exposure to temps over 85 degrees. You are right - timing is so important.

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necksurgerygonewrong | @necksurgerygonewrong | 1 hour ago

Hi everyone,
I'm new here and hoping to connect with others who have baroreflex failure or suspected baroreflex injury.
My problems started after cervical spine surgery. Before surgery, I had normal blood pressure. Within a few weeks afterward, my blood pressure became extremely difficult to control and has remained that way ever since.
I've seen multiple cardiologists, an autonomic specialist, a nephrologist, and have undergone extensive testing. My doctors believe I likely suffered damage to the baroreceptors or the nerves involved in the baroreflex during surgery.
My blood pressure can be very unpredictable. It can surge dangerously high with stress, pain, activity, or sometimes for no obvious reason at all. At other times it drops lower than expected. The swings can be exhausting and frightening.
One of the hardest symptoms for me is the fatigue and weakness. Something as simple as putting dishes away in an upper cabinet can make my arms feel exhausted. I get short of breath and wiped out from everyday activities like showering, getting dressed, or walking short distances. There are days when it feels like I am operating on a very small battery.
The emotional side has been difficult too. It's isolating to have a rare condition that many healthcare providers have never seen. I've spent months wondering if anyone else experiences the same combination of blood pressure surges, fatigue, weakness, headaches, chest tightness, and exercise intolerance.
My sixth cardiologist recently started me on a clonidine patch, and we're trying to find the right balance of medications while improving my quality of life. There has even been discussion about Barostim therapy in the future if medications don't provide enough control.
If you have baroreflex failure from surgery, radiation, trauma, or another cause, I'd love to hear your story.
What symptoms do you struggle with most? What medications have helped? Has anyone seen improvement over time?
Thank you for reading. It would mean a lot to know I'm not alone in this.

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