Totally Confused!!!

[HopefulLady]

Ok so I took Simmy and Arizona's advice and bought a BP monitor ... Yesterday I had my TTT and my Blood pressure and heart rates were astonishing before the test even started.

But here is the crazy thing Here I am at home I just measured my BP AND HR

BP SUPINE - 113/71 HR 72

STANDING- BP 132/80 HR 105

I am totally confused ? Or is this just a normal thing for someone with dysautonomia to be such fluctuations?

This makes no sense to me ?!? How could my BP be so high yesterday and be normal today????

[Christy_D]

I monitored my son's daily for over 2 months and found that his was all over the place. And sometimes when his heart rate and bp had a signficant change from lying to standing, I would think he would be really symptomatic that day-but sometimes he was feeling great that day. It made no sense as to when his symptoms were worse or better.

[issie]

My BP can change from moment to moment, as well as my HR. Your heart rate increased by more than 30 points. That's the tell, tale symptom. If you go up 30 or more points or over 120 HR, your considered to have POTS. Some people have their BP go up when they stand, others don't. Unlike orthosatic intolerance whose HR drops when they stand. My sister has this, on her TTT within 3 minutes, her Heart stopped. They were getting ready to give her the epi in the heart and it started back. I on the other hand have POTS. My HR increases always 40 or more points. It's the disfunction of the autonomic nerveous system, it's so unpredictable.

[lieze]

Well think of all the activity your body endured just getting up early and ready and to that appt.

That alone is a work out for anyone with POTS.

So if you have been rather sedentary I would expect your bp and pulse to be a little more normal. It's also normal for it to rise when you stand.

I think those look like good POTS numbers to me.

[firewatcher]

Stress is a adrenal churner! You were psyched up and dreading that test, so it is no wonder that your HR and BP were high. I think it effects us all pretty much the same way; it sends us into hyperdrive! Keep a log, if you get to Vanderbilt they will want at least three orthostatic measurements before they see you anyway.

[potsgirl]

Great suggestion on keeping a log. I take my BP/HR supine & standing once or twice a week for baseline, and then more often if I'm feeling especially bad or good. It gives my cardio a good indication (and me) of what may be going on. It's also helpful to write down associated symptoms, ie: really short of breath, dizzy, fainted, etc.

[Kujiforo]

I also keep a sort of log. My heart rate sky rockets even with the slightest movement, though my blood pressure is doing better lately. I took mine the other day. At rest my blood pressure was 120/70-something and my heart rate was 89. On standing - 110/70-something and heart rate at 130. But on some days my blood pressure is 70/50 and my heart rate is 170 when I move around or stand suddenly. So... I'm guessing (if this is even what I have - this POTS thing) that it is typical to see fluctuations to the extreme. I see them in myself and others here have seen it in themselves.

[blueskies]

Hi,

I used to have low blood pressure but now it swings all over the place. I was told by my POTS doc that is is often the case for people with pots.

[Simmy]

Whether you suffer from hypo or hyper POTS, it seems blood pressure varies wildly with most of us. Remember though, that any little movement can alter the results slightly and also, since it takes at least 10 or 15 seconds to acquire a reading and generally they're never taken more than once a minute, there's a lot more going on that it cannot see, just look at the wild changes during your TTT - while upright - up and down.

I've therefore found that a chest-strap-type heart rate monitor watch (search topics) was my best tool to use on a daily basis to identify trends, triggers, and what helps best to alleviate runaway heart rates, because it gives you constant, real-time feedback. Not that I want you to go shell out another sixty bucks after spending money on the blood pressure monitor, but that was the best sixty dollars I ever spent.

[HopefulLady]

Thank You guys again .. I am learning so much ... I was under the impression that the Effexor had it all under control because since being on it I know longer have the pre-syncope spells anymore. But I guess it's not controlling my HR or BP fluctuations too well. My DR's said they don't know how I have been able to go 10 years like this. I told them because I was told I was having panic attacks so I just learned to deal with it. It's sad that many of us have had to go through this so long before finally getting decent treatment. Anyway Simmy I do have a sports watch a polar with a chest strap and I am using it along with BP machine ... Simmy I took your advice and waited 5 minutes this time before taking a standing reading this time my BP dropped heart rate still went over 30+ . I have been asleep most of the day I just feel worn out. I will be glad next week when they can give me something to slow my heart rate so I don't feel like I am running a marathon all day long. Thanks Again Everyone!!!

BP Laying down 120/83 HR 70

BP Standing after 5 minutes 111/80 HR 105

[issie]

Hopeful Lady,

Just keep in mind that there is allot of trial and error that you have to go through when it comes to the meds. You will have to play around with dosages and different kinds. What works for one person, won't work for another. Don't give up in trying. Some of us have much worse numbers. Me, personally--so far, I'm not finding a medicine that is working. I've known for about 2 years what the issue was. But, I've had it since I was about 12 years old and I'm now 50. I've been to soooooo many doctors trying to figure out what was wrong. No one, could figure it out. They always were treating individual components of it. And from what I'm learning that's about all they can do. Because it's so complex and complicated, there is no one solution.

Don't get discouraged!!!! At least, now you know what is wrong and you have a place to start. For me, knowledge has been such a relief, even though I'm no further along in my solution than I was when I found out what it was. I do find that compression garments, make a huge difference. Also, increasing salt and hydration is important. I find that Emergen C is beneficial. I just recently started using Licorice Root --instead of Florinef. Florinef gave me a headache and made my BP go too high. I've only been on it 3 days, but I'm finding that I'm not using the bathroom as often. So I am holding my fluids better. That's a good thiing. I always feel dehydrated, no matter how much I drink. Just remember, you too can do it. You've got a good support system here at this site. We all know what you're going through. I've learned allot since coming here and I know I still have allot to learn. It's a good place to get some really good information and tips from others who actually KNOW and have EMPATHY!!!! We're all in this boat together, we're not gonna let it sink!

RIGHT PEOPLE?????????

[HopefulLady]

Thank You Isse. I can't imagine not having any comfort at all with medications. I have read some of the posts stories on here and I feel so lucky that something is working and treating my symptoms god knows I couldn't take care of my 2 children if I had to live with those symptoms 24 hours a day like I was off the effexor. I am a single mother and it's been tuff being sick and not being able to do all the things I want to do. But there is no better relief than sleeping at night now knowing what is going on with me. I didn't know one minute from the next where I was going or what was going to happen to me. I went back to college and had to quit because of my symptoms. I just want to live again and have more energy than I normally do. But I can't complain when some of you don't get any relief from medications. I don't know how you guys pull through. I thought I was dying a slow death everyday for the last 10 years being on the effexor has at least allowed me to get out the house and do the simple things I need to do without feeling faint and bad all day long. You guys give me hope and encouragement to fight back at this thing and I am no longer terrified because I know I am not alone. That in itself gives me a whole lot of peace. Thank You so much I can't tell you enough how grateful I feel to be surrounded by you all. You all are in my prayers and I hope that we can find a cure for this terrible illness someday.

Tara

[Guest humanb4monitor]

I was actually diagnosed exactly from a minute to minute reader thingy so YUP!

(((Hugs)))