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Callmil30 Callmil30

Baroreflex Failure / Baroreceptor Failure

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.

52 Replies

  • Go away Go away Callmil30

    Hi there, I also have this condition. I had a radical neck dissection and aggressive radiotherapy in 2000. I have may symptoms with the Baroreflex failure and at present am ill with other symptoms also. I am so frustrated as I have basically been diagnosed with it and left( no follow ups or anything) 

    please can can you tell me what if any treatment or help you are having. I live in the UK ......do you? I don't know anyone else with this condition. 

    • Callmil30 Callmil30 Go away

      I am from uk, but based overseas, with not the best of medical care here for out of the ordinary conditions. I was wrongly diagnosed to start with and got quite sick, then I was basically told to go back to UK, but when I started to look at UK, I did not know where to go. I found a doctor here by random web search, who is not only a Cardiologist, but can do internal medicine, and has had a few cases like this before. There is no cure for baroreflex failure, and it depends on the patient general condition. Initally my bp was in the high 200s dropping to 60s, it was way off. A dr has to do trial and error to get you reasonably stabilised - it is unlikely to be stable, but controlled. My bp is still up and down, but a lot more controlled. The dr has prescribed a mixture of an old bp control medicine and beta blocker - Aldomet 250 mg, Inderel 20mg andDilatrend 6.25 mg. I take them all in the morning. I do have more issues with low bp, but manageable. I have been on medicine for almost  2 years now, and still improving. You need a dr that is willing to try different medicine - but have knowledge or contact with other hospital to know what to try. Best hospital for this is Cleveland Clinic in USA ! Not that I have had any contact or help for them, but they know what to do with barorflex failure - http://my.clevelandclinic.org/services/urology-kidney/departments-centers/nephrology/center-study-blood-pressure-fluid-electrolyte-disorders You say you have other problems. After 10 years I lost ability to eat, including trouble with aspirating, and now I am fed through a feeding tube (via a mic-key) button. Sounds bad, but actually I am in best condition in a long time. And still manage to work and live overseas. Let me know if I can help anymore.

    • Callmil30 Callmil30 anne98116

      It is classed as an older bp medicine here called Aldomet 250 mg, but also along with Inderel and Dilatrend, which are beta blockers. When I was admitted to hospital for something else, the doctors (other drs) were not comfortable with the mixture of medicine (did not make sense), so they stopped it and only want to give me the bp medicine. But then my bp went high and all over the place again, so after going back on the mixture it stabilsed again (as far as it can stabilise). The mix of medicine seems to work for me. I have more issues with low than high blood pressure now, but later at nights when not active.

    • Go away Go away

      PS.....I also have gastric problems, prolapses, joint and nerve pain, bronchiectasis and pooling in feet due to stretchy blood vessels from the EDS. They think that the EDS has been there since childhood but has worsened after the cancer and radiotherapy. I am very pro active regarding my illnesses and am determined to remain as upbeat and healthy as possible.

    • Callmil30 Callmil30 LongJourney

      The link is out of date. Go to Cleveland Clinic, USA website, search barorelex, sometimes called baroreceptor. I was also not treated there ! But they appear to be the world leaders. I am actually based in Abu Dhabi, where there is a Cleveland Clinic here, recently opened. I had to search a lot here and ended up finding a Dr in Dubai. I am from UK, and was struggling to find a dr in the UK with this speciality - not easy. I have had the condition for almost 5 years now. BP still goes up and down, but not near the extreme high levels that it was.

    • LongJourney LongJourney Callmil30

      Thanks for your reply. It caught my attention, as stress can wreak havoc on my blood pressure. Stressful triggers can make my BP go straight up (like a rocket!) 80-100 points in under 30 seconds. It also can fall just as fast and cause what feels to be a lack of oxygen perfusion in the brain. It leaves me momentarily unable to function (walk, talk, stand up, think) until my BP rebounds back. Is it debilitating to live like this everyday. I have seen lots of specialists (in the US) and have bags of BP meds. It's been a very long, exhausting, and expensive journey. Questions:  Does your BP instantly skyrocket with a massive headache, or fall in seconds leaving you unable to walk or talk? Have you had any limb jerking? What do you take to bring down your BP when it surges so high? I take Nifedipine, which is the only drug that will bring it down when it is so high (230-240ish). It has gone to 300+ and cut off my breathing, while I turned blue all over and caused a grandmal seizure.  I have not had neck surgery/cancer, but have fixed pupils in both eyes (doctors stated Adies' Tonic Pupil) for almost 4 decades. Are you pupils normal? I have read of a case of ATP with Baro. I am struggling a lot from my wlid BP. It is debilitating. I appreciate any response. Thanks.

    • Callmil30 Callmil30 LongJourney

      Yes I have had similar. I also used to get very high up to 290 ish - once in hosptial for another check, was over 300 and sent to Emergency, by the time I was there and in bed, dropped to below 100. MT low bp range is 60/40, sometimes my BP is hard to register on the machines. It has been controlled over approx 2 years now. When it was up and down so erratic, I had a lot of problems - with one being getting a dr here to believe me. For two years, I have been on a mixture of bp medicine and beta blockers. 250 mg Aldomet, 6.25 Dilatrend (Carvedilol) and 20 mg of inderel - that what they call it here. It balanced the High BP with only occasional spikes to 145, rare to 160 and during stress up to 180 (but even more rare). I have tried other medicine, but it does not control the rocket jumps of High BP. I still continue to have issues with low BP, from nowhere I have to wait until the "out of it" passes by and avoid fainting - got quite good at it now and just wait until it passes. I am senstive to temperature and this can also affect my bp. When I feel my bp is high, I actually take a long hot bath, but then I have to watch the effects of low BP. Overall I am quite stable now, but it did take a couple of years on steady medicine that worked. Your stories are similar to what I have gone through with now more controlled. SOme of these are unavoidable, but I am in good manageable health at the moment. If need be we can email, rather than big responses on here!

    • LongJourney LongJourney Callmil30

      Hello Callmil30,

      Thanks for your reply. Have you heard/read about anyone with Baroreflex Failure that has "not" had a neck injury/surgery or cancer of the neck? Also, have you heard/read about anyone with Baro. that also has fixed pupil(s) that don't respond to light and can become "frozen" in size? (I have one large pupil and a small pupil, that remain frozen in size.) Thanks for sharing the names of the medications that you take. I plan to share your post with a primary care doctor that I'm scheduled to see next week. Can you please tell me the specifc schedule in which you take the specific amounts of medications? Lastly, are you able to work with this condition? I work full time, but struggle and am concerned about all the extreme BP surges (and yes, falls too) that can cause long-term damage to my body. I am 56 years old and have had these symptoms for 14 years. My BP is still not controlled, and I'm having a difficult time finding a doctor that will believe me when I tell them my symptoms. None of them have helped, and most have never heard of this condition.

      I've been to Abu Dhabi. Two universities offered me a faculty position in Dubai, but I did not accept. This was many years ago, just before my symptoms began. I live in the USA.

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • LongJourney LongJourney Go away

      Hello Go away,

      Can you please explain what you mean by "stretchy blood vessels"? I can literally feel the blood flowing either up or down, depending on whether I am raising my arms above my head or lowering my arms. Thanks.

    • Go away Go away LongJourney

      The stretchiness is part of my Ehlers Danlos. It has an effect on connective tissue and collagen.... When I stand blood collects and pools in my feet as the blood vessels are stretchy ( at least this is the theory of UCLH and an EDS clinic in Sheffield. So as well as the Baroreceptor dysfunction making my BP go low I also have it happening with the blood pooling in my feet. Some people who have EDS have POTS( postural orthostatic tachycardic syndrome) this also has the feature of pooling ..... But I have been tested and don't have POTS. Hope this explains it..... Cheers Geraldine

    • LongJourney LongJourney Go away

      Thanks so much. Have you found anything that helps to prevent the extremely high blood pressure surges and fallsth? What are your symptoms when the BP surges and falls? This condition is debilitating.

    • Go away Go away LongJourney

      Symptoms are.... High BP... Very bad headaches, shaking ( like a massive adrenalin rush) heart pounding and palpitations( tests showed that pain and any stress including entail stress worsens this) oh and excercise. But excercise is important so I mainly walk a lot. Low BP... Hanger pain ....( down neck and across shoulders, dizziness / very faint , I can feel as though I am underwater with alterations in hearing, eyesight changes.... Glittery lights then black. Very weak. The strategies I use to counteract the surges are ...... I start my day of by slowly raising up from lying down as this is the first big change to BP of the day. I also drink 400 mls of water as soon as I rise( before breakfast) throughout the day, I keep well hydrated. Eating can lower the blood pressure so small meals are best. if BP goes low, drinking a big glass of water helps or eating a bit of chocolate..... I also find a coffee helps... Also crossing the legs and pumping the calves or squatting ..... When I go dizzy with low BP I immediately squat. When BP raises ......raising arms above the head helps. I personally have found that I don't sleep well if I have things like dark chocolate or red wine late in the evening.... I've noticed this over a period of time and my theory is that it's the Tyremine/histamine I'm certain foods that affects me as when I go to bed I have restless legs, itch all over and am very restless .... Purely by chance I have found that taking an antihistamine tablet helps. But more than anything Best to avoid those foods that contain it ( In the evening ) hope this helps..... And yes it is extremely debilitating.

    • LongJourney LongJourney Go away

      Go away,

      Thank you for your post. First of all, have you heard of fibromuscular dysplasia (FMD)? In particular, you should read about renal, carotid, and vertebral FMD, although FMD can be in other places, including the heart.

      I agree that, during blood pressure surges, the headaches are so severe that I can't bear them. The headaches are solely caused by the high blood pressure, because they go away when the blood pressure goes back near normal.  The pressure goes so high that I often am nauseated and have "severe" (it hurts!) pain in my heart. I have a lot of flushing in my face, neck, arms, and even feet and lower legs. Both eyes are completely blood shot, glassy, and sunken in. I look so sick that I look awful, and this routinely occurs when I'm in a meeting with several other people at work. I'm not able to stop what is happening to me. It is very embarrassing and difficult. Having a surge in front of a table full of people who don't understand, is very hard, and I'm tired of it. It is jeopardizing my job.

      I too, feel "underwater" at times, when my blood pressure falls because my hearing is instantly reduced by at least 50%. It falls after I've stood up and taken about 7-8 steps. When it falls, I'm unable to stand up staight, walk, or talk, and have to put my head down on a countertop, furniture, or against a wall, because my brain seems to "stop" and I'm too weak to stand up. I can't do anything. I believe it is due to a lack of oxygen in the brain due to the blood pressure falling. This commonly happens 8-10+ times per day. Some days are more severe than others, but it is tiring to continue to live this way.

      I have found that Nifedipine will quickly bring down my blood pressure when it surges. Nothing else will do so. I don't go anywhere without it. I actually bite the capsule to get the "juice" out it, as that works much quicker. When my blood pressure is at 230ish, causing me to feel sooo sick, I can't bear to have it that high, so I'm willing to do anything to get it done. My concern is the potential damage the etreme high and low blood pressures are doing to my health long-term. A couple of times, it has gone to 300. Once it went so high that it cut off my breathing and caused a grand mal seizure for several minutes. Have you read anything about long-term effects?

      It's interesting that you mentioned an antihistamine. For almost a year, I've experienced an instant "all over flash" sensation the first moment I wake up and go to sleep. I don't understand why it happens, but it is very intense and uncomfortable. Its like a sudden chemical release that's released at one time, all over. I don't know if this is related to baro. or not. I going to take an antihistamine to see if it helps. I am also intolerant to temperature change. Heat makes my blood pressure surge, and often very cold temperatures do as well. I literally can not tolerate heat or cold, as my body temperature seems so dysregulated. I am constantly trying to cool off or warm up.

      I also have Adies Tonic Pupil, which the Mayo Cinic surmised may be the cause of the baro. It is believed ATP may be caused by a virus, which could have damaged the nerve that the baroreceptors communicate with. Do you have any size difference with your pupils?

      I have not found a doctor in the USA that has been able to help. Most of the doctors know nothing about it. However, there are a handful of autonomic doctors that do, in different parts of the country, but they are hours from where I live. The doctor that actually identified baro. said he wasn't sure if I have baro. because I haven't had a neck injury/surgery. Yet, he didn't consider ATP. Whereas the Mayo specialist did, and diagnosed me with baro. Developing baro. due to ATP is very rare, hence, my struggle to find a doctor that is able and willing to help. In the meantime, I still struggle each day. I have to work, eventhough I'm truly not able to, because it is so very debilitating. Are you able to hold a job with this condition?

      What are the "triggers" that cause your blood pressure surges? Just talking about my blood pressure is a trigger for me. I believe this is because I have struggled so hard with this condition, for 14 years, that it has been traumatizing to me, to the point that it's hard to discuss it.

      Again, thanks for your information. It helps to read what others are experiencing with this condition.

    • Callmil30 Callmil30 LongJourney

      Dear cindy555,

      The only response I have had to baro reflex failure is here. I have met no one with this condition, or even knows what I am talking about. The medication is Aldomet 250 mg, 6.35 Dilatrend, and 20mg Inderal (may be called something else now). I take all in the morning - at one point 20 inderal in the morning, 10 at night - but too much affect the low bp. Recently after 2.5 years, and because I have been able to boost my intake via feeding tube for 1.5 years (tube disconnects - another story), I have now stopped the inderal and on half the dilatrend - very sensitive, took weeks to come off. It is a mixture of bp medicine and beta blockers. It definitiely worked for me. I had short spell in hospital during changing to feeding tube and they tried to change the medicine and my bp went up to high 200s again. So i went back on it - it must be a bit of a mixture as a lot of drs are wondering why I am on this, and asked me to take responsibility to go back on them

      I am 52. My main problem with low bp is at night in own house, and I manage to get pre warning before any falls - not to start with. At work, I just have to be careful when standing up too quick, or take immediate action if I feel bo is low.

      I have not heard of fixed pupils, but is an interesting point as I have had in the past sort of temporary sparkles and/or darkness in right eye. SOme symtoms come and go.

      I am resident in Abu Dhabi, but I am from Scotland.

    • judy57827 judy57827 LongJourney

      Hello cindy555

      I was diagnosed with suspected Baroreflex failure in March of this year, and I have been searching for months for any support groups or forums for people suffering from this v rare condition.  I am so pleased to have finally found this patient.info forum as hopefully now I can share experiences and find out how other people are affected by this - I have felt v isolated and alone with my symptoms.  I am a 64 year old female.

      I have not had cancer, or surgery of the neck. My blood pressure surges started out of the blue as a one-off in October 2015, and became v frequent from December 2015 requiring multiple A&E visits. I was referred to many departments - heart, gastro, endocrin etc - noone could find a cause as all test came back normal yet my blood pressure kept surging despite bp medication. I was too ill to work and spent most days lying down feeling dreadful with head/heart/chest pains. In desperation (after 1 doctor changed perendopril to doxacosin and I became v unwell with tachycardia) I found a cardiovascular specialist privately in March, who immediately mentioned baroreflex failure and referred me to his specialist blood pressure NHS clinic. I have been under his care at Barts Hospital London since May of this year.  I take clonidine tablets, and amlodipine.  My treatment has been complicated by hyperthyroidism that became hypothyroidism, which is now slowly improving and should be back to normal levels in 3 months or so.  This has caused weight gain, problems with fluid retention in joints, and elevated diastolic bp.

      I recognise many of the symptoms you and Callmil30 mention - the instant "all over flash" sensation- mine used to happen when I was just sitting watching TV, now it is more when I fall asleep or am woken suddenly.  It is like someone throwing a switch in my body and yes it does feel like a sudden chemical release. I get the temporary zigzag/sparkles in both eyes. I only had the temporary darkness during my 1st episode in October last year. I get the very bad headaches, heart pounding, palpitations - mostly no triggers, it just happens totally at random.

      I hope you, and Callmil30, and anyone else suffering from this rare condition, will please reply.  I wish you all well.  Thanks

    • rexjb rexjb Go away

       I also have this condition I live in Austin Texas have any of you tried wearing support stockings? This may stabilize your low blood pressure and you could take medication for the high blood pressure.  I plan on going to Vanderbilt and seeking remedies treatment or medication and I will let you all know I have all the same symptoms exactly like all of you. 

    • rexjb rexjb LongJourney

      I am not sure which doctor I'm seeing at Vanderbilt as of right now. I'm trying different medications to see if this improves they are slow acting and take some weeks to know. I will post any improvements as they develop. My symptoms seem to have gotten worse in the last few weeks are used to get 1 to 2 episodes a day and the other day I had a severe ones yesterday I just had to and this morning I've just had one but hope they keep going down I'll keep you up-to-date.

    • LongJourney LongJourney rexjb

      Hi Rexjb,

      Dr. David Robertson, at Vanderbilt, is the physician that actually identified and named the condition, Baroreceptor Reflex Failure, many years ago. I saw him as a patient for several years. (Still searching for answers.)

      Would you please take a moment to thoroughly describe the severe episode (mentioned in your last post), and if there was anything that "triggered" it (e.g., instant change in temperature-hot or cold, bending or squatting, simply talking about your BP with someone, laughing with friends, talking with a group of people that you know, physical exertion, etc.)  ? How high and fast (e.g., seconds?) did your BP go up, any headache or anxiety produced by the high BP, any chest pain, any flushing of the face/neck/ankles, very blood shot eyes, feeling like a tight balloon and very sick and weak inside, even nauseous, does the severity of the high BP leaves you instantly non-functional, unable to lie down because the BP would continue to go higher, body jerks, etc. How did you get your BP to come down? How long did it take to finally return to normal? I don't mean to ask too many questions, I just am interested in a very thorough description of whether your episode is similar to what I experience. Much appreciative, thanks.

    • rexjb rexjb LongJourney

      Hot stuffy places for one is a quick reaction to my blood pressure the highest blood pressure is 235/140 on the low side 71/55. I can feel it coming on when it's stuffy inside the house In a building a restaurant a car . In a car I have to turn the AC on to maximum and put my face in front of the vent this seems to help quite a bit. In the house I really struggle to get to the AC if no one's there to help. In the house I struggle to reach thermostat objects start to move in triplets floors walls lighting and I feel like If on the way to the thermostat I have to lay down my head and arms on any table that comes first. I do finally get to my bed and lay down and that seems to be a relief sometimes five minutes sometimes I fall asleep due to fatigue from that episode. I was wearing support stockings for a few days and I had eight episodes in that day I have since taken them off and I had two episodes or maybe three yesterday today I did not wear them and I've had two and it's mid day. Even on days when the blood pressure drops to normal I still get episodes because my blood pressure prior to that was higher. Is far as getting headaches no I don't but when my blood pressure drops and I feel an incident coming by it hurt I feel pressure but no headaches do I breathe harder I think a little bit more than normal . When the incidence are severe I don't dare squat because I'm sure I will faint. I've been drinking a lot more water and that doesn't seem to help.recent episodes have been a lot more severe than a month ago lasting a lot longer. I hope I've answered some of your questions. As I do these experiments I will let everyone know. Even the doctors have told me that it's hitter mess with these experiments and will continue on with them.

    • Callmil30 Callmil30 rexjb

      Your reactions sound the same I found a reasonable balance with medicine. ONe type of bp high pressure medicine actually made my high bp and low bp episodes worse. There is no cure for this as you have found out, and low bp I also do not receive treatment. For me it has worked with a mixture of high bp medicine and beta blockers - again not too much beta blockers or has a lethargic effect. It is far from perfect, but the extreme high bps I avoid, but not high bp which can be short term, but I have been stable for almost 2.5 years. Pre medicine I was either extremely uncomfortable with the ultra high bp or fainting with warning with the low bp. That episodes have gone now.

    • Callmil30 Callmil30 rexjb

      The pills manufacturer name may be different from here, so I will put any names I have in breackets. I started off in the morning with 1 x Aldomet 250mg (Methydopa), 1 x 6.25 mg Dilatrend (Carvedilol) and 2 x 10 mg (1 at night, 1 in morning - Propranolol). It can give a bit of a low bp first thing but only last for about 15 min. I had that for about 2 years and now I take 1 x 250mg Aldomet and 1/2 of 6.25mg Dilatrend. Its not guaranteed to work for everyone, its just the balance I got for me. I have tried to reduce the Dilatrend but high bp episodes increase. during transition off the inital mixture, I would take an occassional Inderel. Note at one point I was given Cosaar 50 mg (Losartan potassium), which is a more modern medicine for high bp, but it did not work at all, quite the opposite.

    • LongJourney LongJourney mina77268

      Dr. David Robertson is recognized as the one who identified Baro. many years ago. I have met him many times. He does not treat Baro. but will consult. They have an autonomic department that conducts many tests for possible diagnosis of Baro./Dysautonomia. Dr. Robertson is nice and very grandfatherly, but he leans heavily in his views that unless one has had a significant injury and/or surgery to the neck, or radiation to the neck, he doesn't believe it is Baro. Yet, I've also read research studies that state for some people who have received the diagnosis of Baro., the cause is "unknown". I tend to believe the "unknown" is also possible. As usual, it's a very long wait to get an appt. with Dr. Robertson. Dr. William Cheshire, who studied under Dr. Robertson and remains in contact with him, works at the Mayo Clinic, in Jacksonville, Florida. He also diagnosis for Baro./Dysautonomia. I have also seen him many times. He is very kind and intellectually impressive. Mayo's testing lab is comparable to Vanderbilt's. I've been through both years ago. It has been a very long and expensive road. Most doctors are not knowledgeable enough about Baro. to effectively help. Good luck.

    • LongJourney LongJourney judy57827

      Hello Judy,

      I wanted to follow up with you to see how you are doing. Have you learned any more news for treatment? I find it very interesting that you have been diagnosed with Baro. but have had no neck injury, surgery, or radiation. I have also the same symptoms of Baro. and it is very difficult to work and function with all the symptoms. Yet, I do. I welcome any news that you can share. I'm also wondering if you have heard of PseudoPheochromocytoma and what you may know in regard to how it and Baro. compare. How are both distinguished from each other? Thanks and many blessings!

    • mobyjoby mobyjoby judy57827

      Hi judy57827

      I wondered if you could tell me which doctor you saw and whether you neded a gp referral to see him privately?

      Also once you saw him privately was he able to just refer you to his nhs clinic from his private practice?

      Hope you are feeling some benefit from treatment.

    • judy57827 judy57827 mobyjoby

      Hi mobyjoby

      Apologies for the delay in replying - I haven't had the opportunity to visit this forum for a while.

      I found Dr Melvin Lobo online - and so very pleased and relieved that I did.  He seems to be very well-known and very highly respected at every hospital I attend (UCH A&E, Ear Nose & Throat Hospital, Queens Square, Royal London etc). I asked my GP to refer me to him; I don't know if he accepts self-referrals at the London Bridge Hospital, he may well do, but I wanted my GP to send all my A&E admission letters, and tests from various departments while they were trying to find out was was wrong with me.

      During my 1st consultation with him at London Bridge, before I had even asked him to do so, he said if my GP would refer me to his NHS Blood Pressure Centre of Excellence at Barts (St Bartholomew), he would see me there as an NHS patient as I needed a lot of tests and do not have private health cover.  I believe one needs the GP referral to Barts in order to be accepted as an NHS patient there.

      He immediately prescribed Clonidine tablets, which has vastly reduced my BP surges, though I do still get them sometimes out of the blue for no reason. Clonidine patches are preferred to tablets but I seem allergic to them.

      I hope all this helps. Do let me know you you get on.  I still do not know a single soul with Baroreflex Failure, and feel v isolated with this condition.

      Best wishes

    • judy57827 judy57827 LongJourney

      Hi Long Journey

      Apologies for the lengthy delay in replying, but I haven't had the opportunity to come on this forum for some time.

      In essence, my treatment consists of Clonidine tablets to control the blood pressure daily, with 5 mg Diazepam to control the occasional blood pressure surges I still have. 

      It seems there is some possible treatment in the pipeline, experimental in the UK at this point, of implanting a device into the neck to replicate the function of the baroreceptor - I only was able to find one article on this and there are associated problems ie. recalibration of chip, risk of infection/ rejection, morbidity.  I have discussed the chip with my doctor at Barts - I don't fit the criteria anyway!

      I am very pleased for you that you are able to continue working and functioning with Baroreflex failure - from when it assailed me in mid December 2015 I was to ill work, had to retire from the small charity where I had worked for 12 years, am still not well enough to return as a volunteer.  I regularly experience strange sensations in my heart/chest, and I have to spend a lot of time resting, though that may be due in part to my thyroid problem that was diagnosed shortly after I became unwell.

      I don't know anything about PseudoPheochromocytoma, sorry. I think that could be best answered by an Endocrinologist, or Cardiovascular specialist.

      It would be good to hear from you again, as I don't know a single soul with Baroreflex Failure to share experiences, symptoms, coping mechanisms etc.

      All the very best

  • anne98116 anne98116 Callmil30

    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.

    • Callmil30 Callmil30 anne98116

      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.

    • Go away Go away anne98116

      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.

    • Go away Go away anne98116

      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

  • rexjb rexjb Callmil30

     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  

  • rexjb rexjb Callmil30

    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 

    • Callmil30 Callmil30 rexjb

      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.

  • rexjb rexjb Callmil30

     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 

  • mina77268 mina77268 Callmil30

    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. 

    • Go away Go away mina77268

      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.

    • mina77268 mina77268 Go away

      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.

    • nani59485 nani59485 Go away

      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!

  • mina77268 mina77268 Callmil30

    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.

    • Callmil30 Callmil30 mina77268

      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.

    • Droozy89 Droozy89 Callmil30

      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

    • rexjb rexjb Droozy89

      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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