Anyone with baroreflex failure?

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....

@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.

@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.

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.

I can't believe I finally found someone who has the same symptoms I do. I've spent several years taking every test you can imagine from all sorts of doctors. Nothing was lining up with any type of disease. one doctor finally came up with the idea of the tilt table test which I failed. I was directed to a neurologist who diagnosed me with barrow reflex failure, but he cannot ascertain what is causing it. I've never had any type of chemo or neck surgery or neck injury. He recently just sent me for an MRI of my cervical spine, which came back normal. He informed me last week that we are at the end of the road for testing.He has sent me for so many different tests.And so much blood work, and i've never fit any of the boxes for any diseases or conditions. I am on clonidine now for my blood pressure, but I can still be at 85/47 in the morning and later in the day, be at 134/76. I too am unable to put more than two or three dishes away.If I have to reach above my head, the distance I can walk without my legs feeling like i've been running. And also, being short of breath is minuscule. I had asked him for a prognosis, and he said he couldn't give me one, because he knows what's going on, but he doesn't know why, so there is nothing for him to treat. And unpredictable highs can make it hard to get out of your head.I'm so thankful to find another person with the same symptoms.You cannot even imagine.

Hi Vicki. I have multiple rare diseases and an extensive, complicated history with Dysautonomia. I first suspected POTS in 2014. However, syncope episodes are very rare for me. They happen but not on a daily or weekly basis. My local and Mayo Clinic specialists were concerned regarding my high blood pressure and insisted I meet with a nephrologist to help determine why. I had seen 4 cardiologists and 2 neuroscientists at that point, so I was baffled to learn that a kidney doctor had knowledge regarding Dysautonomia.

I had a TBI during childhood but it did not cause any cognitive impairment. However, I did suffer from what I referred to as “flare-up episodes” I experience and have since childhood, especially with physical activity. I now know they were hypertensive crises. My nephrologist connected the dots and ordered repeat autonomic testing.

I completed my 4th tilt table test last week and received the results today. My 24-hour holter monitor results were also consistent with autonomic dysfunction— just not the more rare forms most doctors aren’t aware of. My TTT results are indicative of autonomic dysfunction as well— specifically Baroreflex Failure. This is a diagnosis I have been trying to pinpoint for 15+ years as it affects me on a daily basis. My symptoms are very similar to what you described. Since my TBI during childhood, my symptoms gradually got worse over the years until I basically became bed / home bound. I’m now 35 years old and the episodes/symptoms still occur and are disabling and debilitating, to say the least.

I hope you’re getting the answers and treatment you deserve. I know just how long it can take to receive these kinds of diagnoses, especially when they’re so rare with a limited amount of specialists. But you’re not alone! If you’d like to chat further, please feel free to reach out. I’ll provide my email and social media handles below. Wishing you the very best!!!

Rachel Colson
Email: Rachel@RLColson.com
Social Media: @rlcolson

Hi Vicki58! 2008 HNC here. I discovered my BP was swinging wildly in 2018. One year and $4500 later, I learned about baroreflex failure. I was told I would have to learn to live with it. The treatments for quality of life did anything but give me quality. Part of the problem is I suffer from supine hypertension, and my BP was through the roof by morning. Finally last fall a new PCP came up with a protocol that was supported by research. It was later modified, and my BP has been stable for extended periods of time. The protocol was: 400mg Labetalol at bedtime, with .1mg of Clonidine for emergencies and 5mg Midodrine when my BP drops too low. A cardiologist I brought on board this spring added 80mg Valsartan at bedtime, which is what really added to the stability. I still have fluctuations induced by stress or activity. Even sitting around at family gatherings can cause a spike. Perhaps that is more stressful than I realize. Surprisingly, a hearty laugh can trigger hypotension events leading to mild fainting. I can say that with the adjustment to the protocol, I've become more comfortable dealing with the ups and downs. I know we all respond differently, but hopefully the results I've experienced will offer some options for others. Live well.