Guest Julia59 Posted April 6, 2006 Report Share Posted April 6, 2006 Hi everyone!Question regarding BP---and when to measure it.Anyway, I measure my HR and BP before noon, sometimes right after I get up in the morning. I find that I am the most relaxed before noon, and I am likely to get the correct reading.As I told you my BP has been running really low---sitting is 95/65---standing--75/55----this is an average.My HR does not seem to go up like it used to when standing---this morning it only went up to 72. Otherwise it's in the 80s standing. The HR doesn't seem to compensate as much---or not at all.Do you think it's better for me to check it more often throughout the day? I don't like to do that, as I start to get more hyper adrengic/anxious as the day goes on, so I'm not sure i'll get a true reading. I'm not all together sure I have hyper-adrengic POTS. Bev told me I do, but no tests have been done to prove this. I just had the catecholamines tested on Tuesday----and this was because I requested the test.Today I have the cardiac echo (say a little prayer that it's OK)----- ---just to check my heart out due to the shortness of breath---and all the coughing. Now I'm figuring that the coughing was from a bad virus, as I'm not doing it nearly as much, and when I do a lot comes up---and my chest feels less heavy every day.The OI has been so bad lately, and I have not been able to venture out much, not even short trips to the store. I still push, but many times I get very disappointed and depressed. I have all the fatigue as usual, but my OI is probably at it's worst. They had me walk around briskly for the catecholamine test, and I was very weak, and had near syncope. My legs were so weak, then the left leg buckled several times. I don't know if this is the OI---or the myelopathy from my spinal issues.The BP is the main concern right now, as I don't know if this is how I am throughout the day. I imagine it must get really low at times when I stand or walk mid day or evening, as I have had several times where I have had near syncope----which is why I'm so much more limited. I do load up on salt, and drink a lot of water while i'm out. I don't wear compression hose which is something I need to try. It might make a difference and allow me to be more functional. I have been avoiding them, as I can't imagine how difficult it will be to pull them up my legs and body. My upper body strength is very bad---I can't even pull a door open in a store. I have to use my foot to pull open doors.Julie :0) Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 6, 2006 Report Share Posted April 6, 2006 Hi,I woul measure it thoughout the day in different orthostatic position, especially when I am more symptomatic. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 6, 2006 Report Share Posted April 6, 2006 When I worked for doctors, we did it this way.Take your bp a couple of times a day, at different times. So, one day when you first get up, or before you get up, then after a meal.Next day, after you've been up awhile or if you feel funny. The point is, do it for a limited period of time ( a week or two), do it at various times, and then stop. Then you look at them and can get an average of what's going on. Make sure you keep a little record of what you are doing. Then you can get a picture of how different things affect your bp, or whether they affect it at all.We are taught as medical people, never to go by one reading of anything. And bp's can vary in very healthy people, so it's like doing a graph. But make sure you limit yourself, or it does become an obssessive type thing. What has happened to my spelling abilities...morgan Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted April 6, 2006 Report Share Posted April 6, 2006 Here's the problem. I know there might be a few of you who understand this.While I need to know what my BP is doing at various parts of the day---I end up getting very anxious about the heart rate thing, as my BP maching shows that also. It one of those things where it is in my head----I've always been anxious about a high heart rate, as mine gets high even on the beta blocker---and it scares me.A lot of you POTS vetrans deal with high heart rates all the time. I'm a vetran also, but I'll never get used to that. I can take anything other then that----I feel so out of control when I have tachycardia. I often wonder if it's my ADHD----------my PCP once told me that the combination is bad, because people with ADHD are very hyper sensitive---and so are people with POTS.Once my little pomeranian dog was sitting on my lap and she was panting. This was a while ago---2001. I thought that was my heart pounding. When I walk in big buildings I can feel the vibrations of the heating or cooling system---ect. I can drive a stick shift so smooth---you wouldn't know it's a stick shift if you were a passenger. It's because I can literally feel the workings of the clutch. I don't know how well I would do now because of the myelopathy, but I still feel things inside my body---I know it must sound crazy, but unfortunately it's a reality for me.It's more or less a curse. I'm rather embarrassed about it, and I have never told anyone other then my husband---and now my POTS friends. I'm taking klonopin 1/4 of a .50 twice a day, one with dinner, and one late evening---this is when i'm at my worst with the adrenaline levels.This illness is BULLROAR. Can you tell i'm not having the best of days............. Julie :0) Quote Link to comment Share on other sites More sharing options...
ellen Posted April 6, 2006 Report Share Posted April 6, 2006 Julie, I take my blood pressure often, and record the date, time and results in a notebook I keep in my nightstand. If I don't like a reading, I take it again. It doesn't cost anything. It doesn't hurt. I usually take a reading while lying down, then take several while standing, over about five minutes. My BP monitor records up to 8 consecutive readings. Eventually I'll have a log of information which might be useful in understanding my POTS better. I think if you take it more often it doesn't cause anxiety (you get used to it ). Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 6, 2006 Report Share Posted April 6, 2006 Hi Julia,I know you have discussed that with some members before and I don't want to hurt your feelings. I think you should have some kind of cognitive behavioural therapy to help you deal with the anxiety issues. It seems to be messing up a lot with your POTS (ie tests, meds, symptoms,, your relationships and even your every day living).Love Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted April 6, 2006 Report Share Posted April 6, 2006 Hi Julie!!Well waht i do is i take my BP first thing when I wake up.. even before I sut up in bed... and i take it before i go to bed to see if my pressure is high enough to take my night time dose of clonidine..those 2 times of day are for sure.. and If I am feeling really really bad and majorly potsy.. I will check it.. but I try not to check it like alot thur out the day b/c i allready know its going to be way low.. and it just freaks me out sometmes.. when i get those really really low reading of BP an HR..so If I were to offer a suggestion it would be in the morning first things..maybe midmorning after you've been up awhile and ahvie been moving around- then like mid afternoon early evening.. and bed time.. and then if you crash or something during the day or get really symptomatic then checkit. and yes keep a running log of you readings.. and take then to grubb/bev for your next appointment so that thaty can see what going on to better help you..take care dear!!HUGSLinda Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted April 6, 2006 Report Share Posted April 6, 2006 Thanks for the advice everyone!Taking my BP is OK-----but when i'm really hyperadrengic I hate to take it as I don't want to know my HR---because I get more freaked out when it's high----I'm usually more hyperadrengic in the evening. Linda---it freaks you out when it's really low. I don't think I have experienced the low HR yet, unless I get a sudden drop in HR---then I think that is when I feel like my heart is dropping into my belly----------------------------- I would scare me if my HR got really low--like in the low 50s or 40s------as this in not my usual pattern.When my BP is really low it doesn't scare me---and it probably should. I guess I relly feel it when I try to do anything requiring any physical effort, like cooking a meal, or trying to make a short trip to the store.If i'm relaxed, and I suddenly get symptomatic/near syncope---it's probably a sudden drop in BP---even a gradual drop eventually gets me.Take care---everyone--thanks again1Julie :0) Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted April 6, 2006 Report Share Posted April 6, 2006 yeah I know what youmean Julie-- hang in there!!!hugs' linda Quote Link to comment Share on other sites More sharing options...
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