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

      Hi Nani59485,

      Your post was very interesting. I have experienced the same unbearable, daily extreme high and low blood pressures for about 15 years. I have read that a person can have Baroreceptor Reflex Failure with "no" history of throat or neck surgery/cancer. (Of course, there are members on this site "with" a history of the later and have been diagnosed with Baro. ) Will members of this site please reply with your understanding of whether one can officially have Baroreceptor Reflex Failure/Dysfunction and NOT have had throat or neck surgery/cancer?

      Secondly, what are the differences between "pseudo"-pheochromocytoma (not to be confused with pheochromocytoma) and

      Baroreceptor Reflex Failure/Dysfunction?

      Lastly, can one with Baroreflex Failure/Dysfunction go through a period of time (weeks - while "still" taking one's blood pressure medications), in which the blood pressure readings improve some? If so, for how long, why, and how were your blood pressure readings later?

      ANY REPLIES WILL BE GREATLY APPRECIATED!! THANK YOU!!

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    • Posted

      Hi

      I have no history of neck or throat cancer but have official diagnoses of Baroreflex Failure and PanDysautomnia.

      Yes my blood pressure readings can be relatively normal for several days but the surges always return - often completely out of the blue when I am not particularly stressed or doing anything physical - then drop after I've taken a Diazepam. It's just a horrible repeating cycle.

      With regard to the cause of baroreflex failure without cancer involvement - and speaking only for myself and my particular circumstances - in my layman's opinion I suspect that, unbeknown to me at the time, my Vitamin D levels dropped so very low it affected/knocked out/impaired my thyroid and liver functions, which in turn affected/ caused leaky gut syndrome. All of these combined together in a sort of perfect storm domino effect to affect my autonomic nervous system which then affected my barorecptors, at the same time as I was under huge stress dealing with sorting out very complicated Probate following the death of my father.

      Hope this may be of some help. Look forward to hearing from you and others about their experiences.

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    • Posted

      Hi Judy57827,

      I'm always glad to hear from you and pray that you will be able to find the answers you need to help you! I appreciate the information that you shared. Baroreceptor Reflex Failure (BRF) is such a baffling and difficult condition to live with. It seems there is still much to be learned about it. In fact, there is very little known about it. I am one of those whose cause is "unknown". I've been multiple times to world renown medical institutions in the United States, and had every possible scan, test, and lab work conducted multiple times from head to toe, over the years. I came to the point that I had to just stop going to doctors because the time, money, and wear on my health to pursue answers was becoming too exhaustive and stressful. I believe stress certainly exacerbates the symptoms, and the symptoms can make one certainly feel/display anxiety and feel/look very sick (very blood shot, sunken-in eyes, skin flushing red, extreme weakness, etc). However, I'm not convinced that stress and anxiety necessarily are the culprits of BRF. For me, extreme high and low blood pressures can occur out of the blue, for no reason (even in a deep sleep). In "my" lay person's opinion, the cause is definitely related physiologically to damage in some part(s) of the Autonomic Nervous System, which include the Baroreceptors. It seems the damage can be a result of different explanations.

      QUESTIONS:

      Has anyone had an "extreme" illness (not necessarily cancer), with a very high fever, at some point, prior to the onset of BRF symptoms?

      Does anyone on this forum also have Aide's Tonic Pupil(s)? A doctor at the Mayo Clinic in Jacksonville, FL thought a possible virus that caused my bilateral ATP could have damaged the nuclei of the solitary tract in the medulla, that led to BRF. He mapped the pathway in which this was possible.

      For the past year, I have developed uncontrollable small tremors in my fingers. I wonder if anyone else has experienced this?

      Also, I would love to hear from anyone that has experienced seizures (not epileptic) "after" developing BRF. I've also experienced repeated, significant seizures for years, but only after having BFR for many years.

      Again, any responses will be greatly appreciated! Thank you!

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    • Posted

      Hi Ling123,

      To answer your question about seizures, I have lost consciousnesses many times but I believe it was due to a rapid and extreme fall in my blood pressure. The seizures have been countless across many years, sometimes multiple times a day, every day, for weeks, months, and off-an-on during the weeks, for years. During each seizure, I could not talk, stand, walk, or communicate in any form. Oddly, I could hear, and even see, but it was a frozen stare. It seemed my mind just completely stopped. Every time, both of my arms would involuntarily jerk ballistically inward/outward, repeatedly. Both of my feet would also do the same upward and downward (sitting). My head would jerk to the left most of the time. There were times when this would last many hours non-stop. I don't know precisely why the seizures occur, but I wonder if it could be related to Baro. or the suffering caused by Baro. In other words, I have honestly suffered beyond description with Baro. for over 14 years, so much that it became traumatizing to me.

      I share the following only in attempt to try to explain. Astronomical instant, daily blood pressure surges (average 240ish/190ish) were always accompanied with massive headaches (and nausea) until I could get my blood pressure to come down. Sometimes, the surges would occur 2-3 times per day, and last 2-4 hours each. The blood pressure falls (low 50ish/38ish) would put me to sleep if sitting, or cause me to stagger (and sometimes faint) when going from sitting to standing. The surges and falls occurred with "and" without stress triggers. They surges would even occur routinely at approximately 3:00 am (from a deep sleep), or when I'm alone working quieting on my computer. These events occurring on a daily basis for many "years" reached a point of being so unbearable, that I couldn't function. This was largely because I could not bear another massive headache that was always caused by another surge. The headaches were so bad that they would leave my head very "sore" until the next surge. It became a vicious cycle! This, coupled with constantly searching for any doctor that could help, and every possible body scan, blood draw, urine analysis, 24-hour blood pressure/heart monitoring, Dysautonomia tests, and hit-and-miss combinations of medications, countless times, across many different specialists, and states in the USA, for at least 10 straight years, became more than I could bear. It really became traumatizing, after being soooo sick, for so many years. I state all of this, only to attempt to explain why possibly the seizures began. If anyone reading this has experienced similar seizures and has Baro. or Dysautonomia, I would greatly love to hear from you!!

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    • Posted

      Hi LongJourney,

      How does the body take so much bashing?

      How is your heart function?

      How do u carry on on a day-to-day basis?

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