Baroreflex Failure / Baroreceptor Failure

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I am an 8 year head and neck cancer survivor, which needed extensive radiation. I now have labile hypotension, with either very high to very low blood pressure, unstable. All tests on heart etc, show that I these are normal, and it now appears that I have baroreflex failure - is a condition for long term radiation head and neck patients. Now I need to see a specialist, but I don't know what type of specialist / dr I need.

Can anyone help, or heard of this.

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  • Posted

    I have afferent baroreflex distinction from head and neck I radiation for cancer 18 years ago. Probably had it a while and treatment and diagnosis took years. Cardiologists, endocrinologists and nephrologists failed to recognise it. In UK, Bristol Heart Unit helped then Privately Professor Mathias, then attempted to get help from National Neurological Hospital in Queens Square in London. Special tests are needed and waiting lists are very long. Appropriate treatment has still not been found. I take moxonodine and still am not controlled 280/140 to 70/40. Finding affective drugs and working out if they work is very difficult. Reaction to minor stress is my main problem.

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    • Posted

      That was about the range of my bp - but continual high bp is risky and should be lowered, as you probably know very well. Refer to my other reply, and what I read about it, a concoction of medicines need to be tried out. There are no specific medicines available that can completely stabilise. My bp can be normal during the day, with occasional high bp but now only to 160/100, usually before I take my medicine. I can have problems with low bp similar to 70/40 - only instruction I have for that is drink water, fluid increases pressure seemingly. It works sometimes.
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    • Posted

      Hi there , I have just seen your post. I was diagnosed at UCLH last July. I attended the Autonomic Unit for 3 days of tests under Dr Ingle. I have Autonomic failure/ Baroreceptoe failure and Ehlers Danlos Syndrome. I had a radical neck dissection in 2000 followed by aggressive radiotherapy ( I was severely burned) and have a lot of scarring. Medical opinion is that this is rare. I am interested to speak to others who have the same condition and who have also had head and neck radiotherapy. I had a tonsillar primary ) squamous cell carcinoma) which spread to my Lymph glands. I am a 58 year old female.
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    • Posted

      Hello Anne. I too have Afferent Baroreceptor dysfunction. I was diagnosed at UCLH Queens Square also ( under Dr Ingle) I also had head and neck radiation following a radical neck dissection for throat cancer 16 years ago in York. I would be very interested in communicating with you as I believe our condition is very rare.

      Kind regards. Geraldine

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  • Posted

     I found your chat room the other day, and I also have the symptoms just like everyone's described  it's been about 10 years since I've had the symptoms but they have been  A lot more debilitating in the last few months. 

        I've gone to his few specialist in San Antonio and Austin Texas. My brother-in-law is a heart doctor at  The University of Michigan .he's on the faculty . The reason why I mentioned this is there's an IBM computer and it's name is Watson . It reads every medical journal every day throughout the world. It can read 10,000 books a minute.  It is proving to be very accurate and being used in North Carolina at the Cancer Hospital.  Maybe there's some journals out there that he has read on our condition I understand there's about 3000 to 8000 journals a day that  WATSON reads.

         As of this day I  started wearing support stockings and I will let you know if that helps to bring the low-pressure up and then I can take medications for the high-pressure  I will also let all of you know if we were able to speak to WATSON  

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  • Posted

    I too have high blood and low blood pressure. I've seen every specialist I can in Texas and they all tell me that there is no cure for this. But what has helped me is compression stockings I just have the ones that go to the knee  but I understand you can get some that are more like pantyhose I'm able to bring the blood pressure up and can control it with medication to stabilize it also drinking plenty of water  helps somewhat I am looking into trying to talk to a computer call WATSON  this computer it was developed by IBM and are you sending it in medical cancer treatments. It reads 10,000 bucks a minute and what's impressive about that it also reads 3000to 8000 medical journals today. This my 10th year  with this issue but it has been getting worse in the last two months. I will let you know if I was able  to communicate with WATSON 

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    • Posted

      Hi. Elementary my dear Watson ! It is also my understanding that there is no cure for it, find the correct medicine to control it. My current medication and lifestyle tends to make it manageable, with average normal blood pressure. I have to watch the high bp, which can be kicked off. I have found various methods to help bring it down, sometimes even a hot bath. I do go the gym - which helps to stabilise also, but I have go to a warm jacuzzi afterwards to avoid the high bp after effect - I can actually get low bp during exercise. Low bp is common in the evening, but also manageable, where I just have to either take my time, or sit through the haziness (the almost fainting type episodes). I have heard about compression stockings, and would consider if it got worse. I have been on the same medicine for almost 2 years and it has kept me stable ... ish. without it, I go sky high.
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  • Posted

     I've seen two specialist one at M.D. Anderson in Houston Texas  cancer center where I've had my radiation and the other in San Antonio and both have told me there is no cure for this. With no other explanations .  So it looks like it's up to us to figure things out. My brother-in-law is a heart surgeon at the university of Michigan. He is trying to help me and giving me suggestions.  I started wearing support stockings. Also I squat just when the symptoms of starting.  I am starting to take some medication but it's a slow process to get results I will let you know if this helps.   I also have been drinking a lot more water and salt the items. 

                                                                                 Here we are floating together 

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  • Posted

    I have recently been told that I have Baroreceptor failure. I am still undergoing a battery of tests and will see my cardiologist in a week. Hope to return back with my experience after seeing the Doctor. Kindly tell me what drug or combination has worked best for  most people on the forum. I have been on losartan,amlodipine, bystolic and catapress with varying results. The catapress seems to help me the most. 
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    • Posted

      Hi Mina, I have Baroreceptor failure. I was diagnosed at UCLH. I do not take any medication, I was told that meds to bring my BP down could make it too low and meds to raise it would make it too high. I have been taught various techniques to counteract the huge differences in my BP throughout the day and what situations to try to avoid. I also pace my activities as much as possible. Are you in the UK? If you would like any more information or help I am happy to speak to you.
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    • Posted

      Thanks for your reply. I am across the Pond from UK. I have an appointment to see a cardiologist in a couple of days. It will be interesting to know the techniques you use to bring down your blood pressure as that is my main problem. I manage the lows by drinking plenty of tea with a small amount of salt in it. Lying supine especially at night raises the BP a bit, for that I now use a wedge pillow to raise my and it helps also.
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    • Posted

      I am a 33yr old female, married, 3 step children, no children of my own, Normal BMI.Asian/European mixed background, born in NZ (at 30 weeks old), live in UK. Delayed development through puberty, with no natural oestregon produced, bottom of normal bone density. 

      I have EDS the Hypermobile type + all the bonus stuff you get with it. 

      I am looking for an answer to my blood pressure problems and desperately waiting for my first cardiology appointment next week. 

      * Blood Pressure laying low, sitting low to normal, standing low to extremely high as in 60 systolic over 40 diastolic to 255 systolic over 199 diastolic and bouncing back and forth every 30 seconds but only while standing

      * Heart Rate is generally low, resting heart rate is 48-55. Bradycardia overnight as low as 38 but generally around 44. Sitting heart rate 60-70. Standing heart rate 70 to anything above that depending on what that freak is doing, usually around 120

      * R Test (7 day ECG) report came back with Arrhythmia isolated ventricular, supraventricular triplet, relative pauses, bradycardia & tachycardia

      I have been extremely unwell for a number of years and had to give up work entirely last year despite working part time from home. My fatigue is debilitating. My brain fog is stupid, I couldn't remember cup this morning! I can't stand for any length of time without my blood pressure making me unwell. I use a wheelchair pushed by my husband for any distance, and a rollator with a seat for short distances. I stress very easily, even loud noises make me jump out of my skin. I'm waiting for surgery on my bowels, probably removal of rectum and colon due to EDS screwing with them, at present I irrigate rectally. My bladder has a mind of its own and decides to bleed every time I eat yeast and then give me a UTI to follow it up, on prophylactic antibiotics to help this, also high capacity over a litre and retention up to 500ml and emptying via self catheter.

      I'm desperate to know what is going on with my heart, the only similar symptoms I can find are pheochromocytoma and now Baroreflex Failure. My GP tested me for pheochromocytoma a few weeks ago & that was negative. Other GP thinks it's POTs (Postural Orthostatic Tachycardia) and put me on low dose beta blockers.

      I have most of the signs and symptoms of dysautonomia of some sort, but my blood pressure readings are like nothing I have been able to find other than patients with pheochromocytoma. I am desperate to see Dr Ingle, and am hoping my cardiologist will refer me to him. 

      No throat/kneck operations or treatments. Incidentaloma on pituatary gland. 

      Any thoughts peoples? I was amazed to find another EDSer with this condition!

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    • Posted

      You could look up the hyperadrenergenic form of pots as another possibility.

      I hope you get some answers soon x

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  • Posted

    Your starting point will be your cardiologist who will attempt to treat with drug commbinations. I say so because  this condition is not common , it comes with individualized treatments.  Good luck.
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    • Posted

      Dear Mina, I have read through your messages, and others and basically there are certain individual circumstances that can kick off high and low, and also sensitive to temperature. I have had some stability for almost 2 years now, and can go about normal, but its never quite stable. Although I am in Abu Dhabi, I do occassionally go to Doctors when home in UK (near Aberdeen). They seemed to be more clued up and accepting of this - but I have not quite discussed UK medicine. All the best with the cardiologist. At best it is recognised and a balance of medicine, or other is found for you.I do everything normal now, just move around and avoid the episodes that are not so strong now. High bp episodes are more difficult to come down from than come up from low bp.
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    • Posted

      Hi Callmill I have read you posts and I live in Scotland halfway bewteeen Glasgow and Edinburgh . Are you aware of any doctors who are knowledgable about this condition here ? The doctors seem to vary between a diagnosis of hyoeradrenergic pots plus or minus baroredlex dysfunction . My problems are postural . My bp is fine sitting and low lying down . I get massive surges on standing along with massive increases in pulse . 250/146 with a pulse of 150 is common . The only way to stop this is to sit or lie down . I get profuse sweating with this and it is a daily occurrence .i cannot stand any heat at all . My aim in life is to get as cold as possible . I am worse after eating . I am now staring to get random lows ! 90/62 . My 24 hour be monitor showed my bo went down to 72/44 over night but no change in pulse . I am at the end of my tether . No doctors seem to understand and look at me as if I am a nutter ! Do you know any doctors here who can help ? I walk a tight line between highs and lows and it is very difficult to manage . Best wishes Angela
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    • Posted

      I understand what you're going through. I am taking Lisinopril because my blood pressure spiked @ 250 and then drop to 70 now with this medication it is in the 130s pretty regularly. I still have dizzy issues but they're not as severe I'm not telling you to take this but check with your doctor if this may be something you could take to relieve some of your symptoms

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    • Posted

      Hi Angela,

      Your symptom of sweating caught my attention. Be sure doctors have first ruled out pheochromocytoma, as that can also be life threatening but curable. Not trying to diagnose you, but  read about it. 

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