baroreflex

[porque]

Hi to all the night owls who might be up like I am!

I just was thinking as I usually seem to do too much of anyway, but I had an important but tricky question over here that seems pretty important. Anywho,

I was just wondering if a damaged baroreflex could cause hypotension when supine. I seem to be at 120/80 standing and drop to like 105/65 supine/sitting. This seems to be a new symptom and is not realted to my salt/fluid intake. I was just wondering if this had anything to do with my baroreflexes or not. Most literature about baroreflexes seems to be with high BP which I also tend to have when I'm overly stressed. Can this also be related to hypotension too, and what can be done about it? Does this lessen the chance for remission? This might be a question for one of the "super smart" veterns on here. Have a good night.

[Guest tearose]

Hi porque, sorry, not a super smart veteran just one of the bunch...

For a short time you may want to reconsider a few things:

Why do you resist going for a complete ANS workup like to Mayo when they really do treat people with respect and professionalism? They do not treat you like a lab animal, some of the tests are very tough but you get some unique answers because they have some of the most specialized facilities and physicians. You can just go to the administrator of the Mayo and confirm your expectations! Let them know what you hope for before and during your visit! From baroreceptor reflexs to HR and BP variability...ask the toughest questions of the smartest in the field!

Also, you say you were never sick...but you were! An eating disorder can effect you long term too. I have seen literature that discusses pots type symptoms in people who struggle with eating disorders. Many of us have been told mistakenly by an "assuming" doctor that this was what they were thinking and for most of us they were wrong. Since you said you were anorexic, is there a chance you should revisit this?

best regards, tearose

[calypso]

Maybe it's not that your BP is dropping when you sit/lie down, but that it's going up when you stand. BP rising when standing is an indicator that you may develop hypertension down the road, according to a study that was reported on in an issue of Health magazine last summer, I think in the July issue. (I have all the old issues of this magazine at my massage therapy office, and I just happened to come across this last week.) And even if your BP goes up but stays in the normal range (like 120/80), there's still an increased risk. But the article was brief and didn't go into detail as to why this might occur.

Amy

[yogini]

For most people, 105/65 supine would NOT be considered hypotension and is well within the normal range of BP. My understanding is that it is also normal for BP to increase from lying to standing.

If you want to know whether there is a problem with your baroreflex response, you can simply have the valsalva test. I don't know whether these reflexes can be "damaged", per se, or whether they just doesn't respond properly.

I agree with tearose that it might be a good idea for you to go somewhere and have all of these tests so that you can know once and for all whether any of these issues exist. I can tell you that I have many, many more symptoms than you, and all of these tests came back negative for me, except the TTT and the fact that I have documented orthostatic hyoptension and tachycardia.

Like you, porque, I have been told by several doctors that I will be completely better over time. I have accepted that this is likely the case, but I also understand that there is a possibility that I won't get better. Right now that possibility seems remote, so it doesn't make sense for me to worry about it. Unfortunately, I don't think any further testing or theorizing about what is wrong with me will help me at this point. Only time will tell whether I will get better, and in the meanwhile I just need to be patient. I understand that having an illness is something that everyone deals with it in their own way. If you are having trouble dealing with this, maybe it would help you to get counseling.

[Laura]

Hi. When you stand, your blood is pooling in your legs. Your body responds by increasing your heart rate, and often also increasing your blood pressure in order to force the blood in your legs back up to your head. Laura.

[porque]

Thanks guys,

This is just a strange symptom for me to deal with. I've had this stupid illness for nearly a year. I just want some improvements as the tinest improvement would throw me back to normal. I'm not too sure about the baroreflex being damaged either...but wa wondering if it is under control of something else in the nervous system that can just make it go out of whack.

Laura,

I dont think I have blood pooling as I never get red legs/feet, nor do they ever hurt and I dont really have a lot of trouble standing up. Maybe though, this is because I do rise my BP in this response.

Rita,

We do seem to share a lot of similarities with our illness it seems dont we? As for Mayo, I have tried to get in. First I tried to get into the Scottsdale Clininc cuz it is much closer to my southern California home. They laughed at me pretty much and told me that my problems dont sound autonomic in origin but I could go on the waiting list for an internest. No way. The same thing happened at the Rochester location. Same story. My neuro even knows Dr. Low and when he tried to get me in Dr. Low said that is is probably post-viral and I will be better in a year give or take. How nice he can make this assumption based on not even looking at me. So so much for Mayo.

Claypso,

Thanks for the information, I remember reading that article too. I never really had this problem before all this POTS stuff so I think it is just due to my autonomic issues.

Tearose,

Yes I did have an eating disorder many years ago. Five years to be exact. I dont know for sure but I assumed that if it were going to hurt me, then it would have done so long before now. Even when I was aneroxic, I had tons of energy and still played sports. I was only aneroxic for about 4-5 months...then I got better. I had fatty liver and hypothyroid as a result. My endo said they would improve as I re-nourished myself. To his surprise I healed amazinly fast! He was shocked at how fast I got my levels back up to normal. My body likes to heal I guess. Where is that healing power now when I need it? I have searched for issues reguarding eating disorders and ANS issues and found none. If eating disorders caused this kind of stuff then a lot more people would be having this issue.

Thats just my two cents.

[yogini]

I am not sure we are that similar. I had a positive TTT, so I definitely have POTS, whereas your diagnosis seems unclear. It also sounds like you are able to do most of the things you used to do, while my life is still pretty limited by POTS. I can make it to and from work (sometimes barely) and I can do other activities sometimes, but not often. I have a constant feeling that the ground is moving up and down when I walk, I walk at snail's pace, and am tired all the time. There is no way I could be on my feet all day, go rollerblading or do the other things you talk about doing. I am getting better slowly, though, and I do think I will make a full recovery. I think you need to focus on the positive. Even on the off chance that your symptoms continue in the long run, it sounds like you would have a very fulfilling life.

By the way, sorry you didn't get into Mayo. There are other places to get testing, though. You seem very persistent, so keep trying. That's the only way you'll get answers.

[Guest GayleP]

There are other places besides Mayo and I agree, you really do need to get ANS testing done or you will be forever guessing..

Even after having the tests it's no guarantee that you'll get an answer. Your tests results might not show anything and even if they do you still might not get the answer you want which is "when will I get better?". But at least they should then have a better idea as to what is going on and rule out some things.

I don't mean to sound harsh, I just know the frustration of wanting to get better and not knowing when or if ever it'll happen. At least when I went to Mayo I had tests done and I had a better idea as to what was going on with my ANS. And even more important what was not going on.

My BP does what yours does when I stand. And my BP while sitting down can be as low as 80/50. I don't think your BP going up a little is a real concern but again that's where the testing will come in handy.

Finally you mentioned living in Southern Cal. The is no autonomic lab there but there is a doc at UCLA in the neurology dept who specializes in dysautonomia. I forget her name but if you call the neuro dept they should know who it is. She has an Asian last name. And she is usualy booked out a few months. I tried to see her when I went back to visit my familya few years ago but couldn't get in right away.

Again, I don't mean to sound harsh. I just hope you get some of the answers that I don't think we can give you.

[porque]

Rita I was under the impression that you were able to do much more...sorry for that...you have such a positive attitude...for that I commend you...keep it up! I just meant that we were similar in our onset (stomach virus) and we both seem to be very persistant. Yes I feel very lucky that I can do so much and with so little meds, but my heart still aches for a full recovery, and I think that in time I will make one. I really hope you do as well and it seems that the top doctors say you will, and you gotta believe them...they see this stuff all the time and probably make the best predictions. I'm glad you got a good prognosis. I am timid however, of going to palces like mayo because I think it was you that said you went there and all your tests came back fine. That would frustrate me greatly. Although it also gives hope because it means that your damage isnt great enough to pick up on the tests, which is a plus because there is less to heal. I'm just not sure I want to spend all that money on any testing center, givin the fact that I am able to do so much, and that means most likely my tests would be fine and they would just tell me to wait it out and my recovery will come with time. I dont need to spend thousands of dollars to figure that one out!

Gayle,

I'm glad to hear that someone else has BP similar to mine. Did Mayo tell you why this occurs or if it is anything to worry about?

[morgan617]

My understanding of baroreflex is you don't get the usual hypotension, you have significant hypertension. That's why my doctor thinks that could be my problem. It is very normal for the bp to elevate when going from lying to standing, that's how the body compensates for the gravity thing. In baroreflex you bp is way out of whack and you have severe hypertension most of the time. Mine is seldom below 160-180/100-110. whether I am lying ,standing , or sitting. I seem to be just gradually getting worse, but I have other factors going on as well. I always hope people will spontaneously improve and recover their lives, although that has not been my experience. I have days where I am blue about this, but I have also become very realistic in my expectations of what may or may not happen. This is not something that happens overnight, nor is it the same for everyone. I told my doctor to just not call me crazy and he said, how can you not be crazy when you've felt like crap for so long. So, he meant it's ok to have all the feelings we have with this frustrating, unpredictable and devastating , life altering disease. Or group of diseases. I asked him about mitochondrial and he said why would you put yourself through all those tests, when there's so little you can do for it? I realized it was just so I could have a name a real name in a class of a disease so people wouldn't give me stupid looks or say well you look so good. If you say you're in an MD class people go oh no and feel bad for you. Then I thought why do I need that anymore. The important people in my life know somethings wrong and no one else matters. If I woke up tomorrow well, I would be the happiest person on this earth, trust me. But as I don't think that will happen, I'm okay with that too. It's all a matter of perspective. Is this harsh, I hope not. It's not meant to discourage either, I know people have gotten better and gone back to their lives. You don't really see them here, because they've gotten back to their lives, not because they don't exist. So don't give up, but give yourself a break. and hang in there. morgan