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.
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
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.
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
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
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.
Which doctor(s) are you seeing at Vanderbilt? Is Dr. David Robertson one of them? Are they planning to do autonomic testing?
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
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.
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.
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.
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.
Could you tell me what medications you are taking so I can review them with my doctor and dosage
Thank you
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.
Where can I find the chat room? Thanks.
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.
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.
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.
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.
Vanderbilt has an awesome Center for autonomic dyfunction. Good luck.