Anyone with baroreflex failure?

I’m guessing you may.have seen cardiology and neurology.
Did you have autonomic testing with tilt table and BP levels and heart rate measurement at real time of tilt. Autonomic failure can cause orthostatic hypotension and POTS
signs. Are you on blood pressure drugs.?

@seniormed
Hi. I have seen two different cardiologists, both of whom cleared my heart. I am currently seeing a neurologist and failed the tilt table test. I am on several blood pressure medications

My blood pressure does similar swings. It would raise to the 150+ /90+ at night while sleeping then falls randomly during the day to 80/50 range. Yes, 100% energy drain at times from small chores. I am managing it somewhat by taking a 25 mg Losartan at bedtime and 30 mg Mestinon in morning and 30 mg Mestinon mid afternoon. My neurologist came up with this. Brain and heart are in very good condition. Maybe discuss my rx with your doctor. Good luck I know it is a real drag to live with this thing that is not well understood by anyone.

First, has your neurologist determined that you have pure baroreflex failure vs autonomic nervous system failure? Drops in BP with position changes (sitting to standing), standing in the heat or exertion are all symptoms of autonomic nervous failure which is associated with several neurodegenerative diseases (Parkinson's, etc.). Pure baroreflex failure is often associated with injury to the neck or radiation to the neck where the baroreceptors are located. You mention taking several BP meds - are they all to control high BP or are you on some to keep your BP from getting dangerously low? Failing the tilt table test suggests orthostatic hypotension - seen with neurogenic BP drops. Your neurologist can help sort all this out - stay hydrated, avoid exertion in the heat and stay safe while your workup is in process.

@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?

@spibill thanks for sharing. I have been taking Losartan 25 for years and my neurologist recently put me on Mestonin 60 mg 3x daily and Clonidin 0.1 2x daily along with my Losartan (from PCP) and Spironolactone (from nephrologist) . The Colidine has greatly reduced my blood pressure but my shortness of breath and fatigued muscles are worsening still.

@bmfoster Thanks for all the great info. My neurologist has sent me for many tests to rule out other diseases or conditions and has found no indications of any thus far. He has said I dont fit in their boxes. He has given me the diagnosis of baroreflex failure but said he knows "what is happening but not why" and treatment would be trial and error.

@bmfoster no, but he told me my treatment is trial and error, that he knows WHAT is happening but noy WHY. I just had a cervical MRI to check the nerves in my neck and it was within normal

@bmfoster no, but he told me my treatment is trial and error, that he knows WHAT is happening but noy WHY. I just had a cervical MRI to check the nerves in my neck and it was within normal. Also my BP increases with stress and pain, no matter what position I'm in at the time.

@vicki58
This sounds like a complicated problem with meds that can contribute to BP lows and fluid lows - hopefully your specialists are communicating with each other and coordinating their efforts to help you. The fatigue and shortness of breath are problems we share - a cardiology eval noted low grade diastolic dysfunction (heart muscle does not relax completely after beating thereby limiting refilling of the pumping chamber - short explanation). Even though it requires no treatment other than rest when symptoms are noted - it is a limiting set of symptoms physically. Hope you find some answers and relief soon.