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.
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.
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.
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.
... Which old BP med is that?
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.
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.
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.
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.
What is the name of the doctor at the Cleveland Clinic who treats Baroreflex failure? Thanks for the link, but it does not work.
Thanks.
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.
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.
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!
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
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.
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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.
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
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.
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.
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.