Aa
Nightime BP drop
When I first was diagnosed with Pure Autonomic Failure a few months back I was having wide swings in my BP. Generally it was higher when I lay down and lower when I stood up. The longer I was up and about the lower it trended. Being reactive, it could at times of stress jump high as 190/150 but trended more generally to be in much lower ranges. and on the very low side of normal. I have been weaning off my BP meds ( I had high BP when this was diagnosed) as the BP trend is going downward and at this point am on only 1/2 a pill of diovan. Here's the thing that concerns me. My diastolic has always been consistent and is now trending down. My night time BP, as soon as I lay down goes very low. I have had it as low as 77/46 and have lowerd the diovan but last night when I layed down it was still low at 86/48. My heart rate is incapable at this point of ever going above 99 so it is my depth of breathing, RR, and heart contraction that compensates. I do feel the low BP when I experience it.
Yesterday I started off in the morning at 116/67. Diastolic ranged from 48 while lying down last night up to 91 as a high during the day. Systolic ranged from 86 to 118 which is a tighter range then normal. Pulse varied from 62 to 91. I don't know what to think of the low BP when I lay down or of the variable diastolic numbers.
Yesterday I started off in the morning at 116/67. Diastolic ranged from 48 while lying down last night up to 91 as a high during the day. Systolic ranged from 86 to 118 which is a tighter range then normal. Pulse varied from 62 to 91. I don't know what to think of the low BP when I lay down or of the variable diastolic numbers.
First of all thanks for the feedback! I meant to say echocardiogram....not electorcariogram..Must have been a late night post I made...sigh...I will mention to my family doctor when I see him in a couple of weeks the change in the diastolic. I can see it may be important from what you said. It struck me as odd but then I don't know what is odd for this dx. as Auntissie pointed out...all is topsy turvey. I felt in the beginning like up was down and down was up. It kind of hits you like that when you can't rely on your body to react normally anymore...but then you all know that...I truly appreciate all your feed back and camaraderie. This can feel isolating.
There is one person on this forum with PAF who recently contacted me and I got a very nice post from her saying she would be a resource. Then I never heard any more so we haven't actually discussed anything.. I think she probably has something going on in her life right now. I can understand tha. Perhaps at some point she will get back to me....not sure.
I would like to contact Xena if I can find her. You gave me some clues so maybe I can follow them.
I will keep you posted on how all this goes and if anyone has anymore on this subject I will be listening.. Marie
There is one person on this forum with PAF who recently contacted me and I got a very nice post from her saying she would be a resource. Then I never heard any more so we haven't actually discussed anything.. I think she probably has something going on in her life right now. I can understand tha. Perhaps at some point she will get back to me....not sure.
I would like to contact Xena if I can find her. You gave me some clues so maybe I can follow them.
I will keep you posted on how all this goes and if anyone has anymore on this subject I will be listening.. Marie
I'm sorry I didn't spell out about DHF! Some gumshoe work there!
An electocardiogram is not what would demonstrate diastolic heart failure- it's a combo of signs and symptoms and estimated left ventricle size and ejection fraction, for which you would need an echocardiogram, catheterization or MUGA scan.
Some years back, I used to see posts from someone with PAF called Xena on national dysautonomia research foundation's forum, but it has been closed for maintenance for quite some time. Wish you could connect with her, since she'd been living with it awhile already when I used to see her posts & she was a regular & seemed well read, posting articles over there. Has anyone connected with you here with PAF?
An electocardiogram is not what would demonstrate diastolic heart failure- it's a combo of signs and symptoms and estimated left ventricle size and ejection fraction, for which you would need an echocardiogram, catheterization or MUGA scan.
Some years back, I used to see posts from someone with PAF called Xena on national dysautonomia research foundation's forum, but it has been closed for maintenance for quite some time. Wish you could connect with her, since she'd been living with it awhile already when I used to see her posts & she was a regular & seemed well read, posting articles over there. Has anyone connected with you here with PAF?
Yes, these ANS things are pretty unpredictable. You never know which direction things are going. Keep in mind that magnesium can cause your BP to drop. With POTS EVERY position change causes a change in BP and pulse. Even to move your arm will cause a change. It's really very frustrating.
Keep us posted on how you're doing off the BP meds.
Keep us posted on how you're doing off the BP meds.
Just a bit of humor here. I am not so good at decoding acronyms. I looked up DHF using a search engine and first found stock quotes, then dolls at hill factory, then dengue hemorrhagic fever before finally finding diastolic heart failure.!! I have recently had a cardiac electrocardiogram and that showed no major problems. I guess was really wondering if others have had changes in BP with position which then changed over the course of their first being diagnosed.
I am now off all my BP meds. I think as my PAF has become more developed my high BP has been submerged. The low BP has surpassed the high BP or so it seems. My BP still trends down of course the more I am standing and can happen suddenly too. But when I lay down at night the systolic instantly drops 30 points like in less then a minute. Since initially it went up when I layed down I just find it odd it switched. Maybe it is just a part of progressive de-nervation. Not sure. I did read in journals that in PAF about 50% get a rise in BP when they lay down and 50% get a drop. I just haven't read anything about switching between these two groups. Perhaps it was the diovan that masked something in the beginning. I just feel sometimes like I don't know what will happen next as things just keep changing. Guess that is the nature of this.
I am now off all my BP meds. I think as my PAF has become more developed my high BP has been submerged. The low BP has surpassed the high BP or so it seems. My BP still trends down of course the more I am standing and can happen suddenly too. But when I lay down at night the systolic instantly drops 30 points like in less then a minute. Since initially it went up when I layed down I just find it odd it switched. Maybe it is just a part of progressive de-nervation. Not sure. I did read in journals that in PAF about 50% get a rise in BP when they lay down and 50% get a drop. I just haven't read anything about switching between these two groups. Perhaps it was the diovan that masked something in the beginning. I just feel sometimes like I don't know what will happen next as things just keep changing. Guess that is the nature of this.
mtgardner: Yeah, it's a necessary tool when you are taking the BP meds, perhaps one reason I'm better off not being on them! :0) Then I don't have to see how they are not working the way I'd like!
I get frequent migraines and heard Dr. Manny on Fox talking about how people who get migraines more than a certain number of times a year (I'm way over on that count) are more likely to get stroke, but when I told my PCP at the time about it, he said it was a slightly higher risk when I was older. I get concerned about DHF myself, since my diastolic goes up often times with standing. But I guess I'm better off without monkeying with the whole thing for now.
wildas- You might try starting your own thread and ask people to PM you with info, since putting your e-mail on the public forum is against the rules.
I get frequent migraines and heard Dr. Manny on Fox talking about how people who get migraines more than a certain number of times a year (I'm way over on that count) are more likely to get stroke, but when I told my PCP at the time about it, he said it was a slightly higher risk when I was older. I get concerned about DHF myself, since my diastolic goes up often times with standing. But I guess I'm better off without monkeying with the whole thing for now.
wildas- You might try starting your own thread and ask people to PM you with info, since putting your e-mail on the public forum is against the rules.
Looking for a doctor familiar with this problem that might be able to help a friend who is very bad. Has black outs and is dizzy all the time. Can hardly get out of bed.
Thanks.
***@****
nickname: wildas
Thanks.
***@****
nickname: wildas
Sounds like we are having similar experiences. It is most helpful to hear how you approached this. I had to drop my diovan again. Last night the lowest numbers were a more acceptable 98/58. My thinking is that before too long I will be completely off BP meds and will be needing something to boost it up. I have gotten up a few times and slept in a chair as sitting seems more comfortable then laying down. I might try the bed slant/booster pillow thing. I used to be on three hypertensive meds but with the onset of PAF I have weaned off almost all.
Surgi/Menopause, I used to take Verapamil but now it's side effect of lengthening the A-V conduction looms large. I have skipped heartbeats with it. As for taking BP I use it as a tool. On days when I am feeling well and everything is stabilized I don't bother to take it. When I am changing medication strengths I use it to track the result. Right now everything seems to be changing rather quickly and this allows me to show my doctor when I see him what has taken place. We are still all trying to understand how this is effecting me. I hope to reach some amount of stability for stretches of time where I don't have to track it at all. That would be wonderful! It is odd having both high and low BP.
The goal is to have it low enough not to have strokes and high enough not to pass out.
Unfortunately that isn't always possible and of course things keep changing...
Marie
Surgi/Menopause, I used to take Verapamil but now it's side effect of lengthening the A-V conduction looms large. I have skipped heartbeats with it. As for taking BP I use it as a tool. On days when I am feeling well and everything is stabilized I don't bother to take it. When I am changing medication strengths I use it to track the result. Right now everything seems to be changing rather quickly and this allows me to show my doctor when I see him what has taken place. We are still all trying to understand how this is effecting me. I hope to reach some amount of stability for stretches of time where I don't have to track it at all. That would be wonderful! It is odd having both high and low BP.
The goal is to have it low enough not to have strokes and high enough not to pass out.
Unfortunately that isn't always possible and of course things keep changing...
Marie
Guess we might be like hibernating computers too? :0)
I remember going to a heart fair where they say they actually like the blood pressure to be a little elevated with a heart attack because the meds they give drops the BP down. I don't like to take my BP very often, because it tends to make me more anxious about the whole thing. The last cardiologist I went to didn't want me on any BP medication because he felt it would just make me feel worse. I tried it again anyway with my PCP and when I went up to 180 mg of the verapamil I used to be on my BP dropped too low and I got a migraine, so I quit. I mark down I have high and low BP on forms anymore.
Tonyad- See PM about differences between arms.
I remember going to a heart fair where they say they actually like the blood pressure to be a little elevated with a heart attack because the meds they give drops the BP down. I don't like to take my BP very often, because it tends to make me more anxious about the whole thing. The last cardiologist I went to didn't want me on any BP medication because he felt it would just make me feel worse. I tried it again anyway with my PCP and when I went up to 180 mg of the verapamil I used to be on my BP dropped too low and I got a migraine, so I quit. I mark down I have high and low BP on forms anymore.
Tonyad- See PM about differences between arms.
My BP is quite a bit lower when lying down too. I had to stop the beta blockers because the nite BP was too low. I found that if I elevate my head to sleep, it doesn't do it so bad. I would wake myself up because it was so low and my pulse would be shooting up to try to bring it up and I'd have a panic feel because of it. I got a pillow wedge and put extra pillows on top of that. I do have high BP when upright on my feet but not in sitting. It's more normal with sitting. I'm quite certain that my Ehlers Danlos causes blood pooling in my legs and abs and this is part of my issues. I swing very high to low in drastic ways too. It's so frustrating. Keep us posted on what you find to help, maybe it will help us too.
Morning Tonya!
My BP reads the same in both arms but it can change in a nano second...dropping from say 130/80 to 80/55 quite litterally in less then a minute.
Body position changes and neck flexion bring on the most sudden changes. Exercise, eating carbs versus protein, drinking water, wearing my compression stockings, and ambient temperature all influence it. I am getting the hang of it bit by bit.
I came into this dx. with hypertension but the low blood pressure is becoming more prominent and as it does I have been weaning off my hypertension medicine under my doctor's supervision. After this last post I cut it in half and my nighttime BP last night was a more reasonable 101/55 later 116/53 and 112/61. I woke up with higher blood pressure which allowed me more time in the garden pulling weeds! I still have some flexibility in the system because I started with high blood pressure superimposed with periods of very low BP.
For sure BP is like gas in our car's gas tank and when it is low it is hard to have energy to do things. I am planning my summer so the garden watering is less strenuous. I do love gardening and hope to continue it. I just weeded early before the sun comes over the mountain so it was not too hot either.
Thanks for the reply! I always enjoy your posts...:)
My BP reads the same in both arms but it can change in a nano second...dropping from say 130/80 to 80/55 quite litterally in less then a minute.
Body position changes and neck flexion bring on the most sudden changes. Exercise, eating carbs versus protein, drinking water, wearing my compression stockings, and ambient temperature all influence it. I am getting the hang of it bit by bit.
I came into this dx. with hypertension but the low blood pressure is becoming more prominent and as it does I have been weaning off my hypertension medicine under my doctor's supervision. After this last post I cut it in half and my nighttime BP last night was a more reasonable 101/55 later 116/53 and 112/61. I woke up with higher blood pressure which allowed me more time in the garden pulling weeds! I still have some flexibility in the system because I started with high blood pressure superimposed with periods of very low BP.
For sure BP is like gas in our car's gas tank and when it is low it is hard to have energy to do things. I am planning my summer so the garden watering is less strenuous. I do love gardening and hope to continue it. I just weeded early before the sun comes over the mountain so it was not too hot either.
Thanks for the reply! I always enjoy your posts...:)
Hey there :)
I have the same problem.....Though I have usual low B/P...when I lay down, it gets even LOWER! Not quite sure why either. I have also noticed that b/P will just go Haywire out of no where. Meaning, I can take it one minute and it read say....98/64 then w/in say 2 minuyes max....it will read say,,,,,81/46. AND the opposite arm ALWAYS has a different resding! Not just a slight difference but at leat 10 - 15 number difference! Do you have that?
Anyhow, I hope that you get to feeling better. Do you get syncope w/ the B/P changing or Pre - Syncope? I certainly do..
Talk with you soon,
~Tonya
Thanks for the reply. Maybe I am just hybernating! ;)
I find it odd that before this my BP went up at night and suddenly it is doing the opposite. Always would like to understand the whys but know they are not always easy to figure out. My immediate thought is that I am getting too much of the BP med. I am only on 1`/2 pill right now but my guess is before long I won't be on any. Id is odd having high and low BP at the same time.
I just don't know how low that the diastolic can go before you worry if the heart will stop. I thought the 40's were a bit too low. I know when my systolic gets into the 50's I am definitely not feeling well. Again, this is all new to me.
Thanks again. Nice chatting with you...:)
I find it odd that before this my BP went up at night and suddenly it is doing the opposite. Always would like to understand the whys but know they are not always easy to figure out. My immediate thought is that I am getting too much of the BP med. I am only on 1`/2 pill right now but my guess is before long I won't be on any. Id is odd having high and low BP at the same time.
I just don't know how low that the diastolic can go before you worry if the heart will stop. I thought the 40's were a bit too low. I know when my systolic gets into the 50's I am definitely not feeling well. Again, this is all new to me.
Thanks again. Nice chatting with you...:)
Not sure if this helps any and I don't have PAF, but here's some reminiscing.... when I was in the hospital waiting for an angiogram due to an abnormal nuclear med test and chest pain, they had me on nitroglycerine and woke me up in the wee hours of the morning so they could take my blood pressure- it was very, very low- lower than other times with the same patch on me. I wondered if my body goes into a kind of hibernation like a bear when sleeping, since I have tended to be a heavy sleeper since childhood. Wonder if something like that could be what's happening with you now?
Your diastolic is the number of when your heart is at rest and I think the doctors tend to be more concerned if the systolic is very low- like your 86 reading. Once way back in 1996 before I was ever diagnosed with POTS, I went to a doctor and showed them a home blood pressure reading (sitting BP) of 96/59. They said if I was feeling bad and say, having diarrhea, they might be concerned, but since I was sitting there (in the office) smiling, they weren't concerned. Back in those days, when my heart rate sounded too fast to suit a doctor, they'd tell me to take some deep breaths- ah that was better.
Your diastolic is the number of when your heart is at rest and I think the doctors tend to be more concerned if the systolic is very low- like your 86 reading. Once way back in 1996 before I was ever diagnosed with POTS, I went to a doctor and showed them a home blood pressure reading (sitting BP) of 96/59. They said if I was feeling bad and say, having diarrhea, they might be concerned, but since I was sitting there (in the office) smiling, they weren't concerned. Back in those days, when my heart rate sounded too fast to suit a doctor, they'd tell me to take some deep breaths- ah that was better.
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