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Any Benefit Of Having A Heart Rate Monitor?


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My daughter is 17, has EDS and POTS and NMH. She recently started Effexor75mg 1x/day and had to cut that in half because her energy level surged and heart rate was TOO high. It was wonderful in many ways, the sweetest when she declared that chemistry was interesting and fun again. Her focus was back and it had been missing for several years. With half dose, not as much focus and energy and still an elevated HR.

Since last summer when POTS hit, I have been checking her BP and HR when she was so fatigued she just wanted to lay down so I caught the hypotension episodes. With the new symptoms (fatigue, lightheaded after standing up) after starting Effexor, I started checking her BP and HR when she stood up. Her HR is definitely up. I'm assuming this is related to the new medication and not the increase in activity since she is feeling so much more energetic.

Would it be helpful for her to know what her heart rate is? She doesn't always notice the fast rate. Would it help to check the rate when she feels symptomatic and then......... what? Keep going? Sit down with feet up?

Knowledge can be power but with POTS..... would knowledge be just more frustration?

Her doctor wants her to give the medication 3 more weeks to see how her body adjusts. In the meantime, we're still trying to figure this all out. Pure POTS related to EDS? POTS exacerbated by initiating Effexor? POTS exacerbated by more activity? Any combination of the three? How do you tease it apart? What do YOU do when your rate is up? How do you get it down (other than laying down) or can you?

Thanks for any opinions and words of wisdom.

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The only thing I can do to get my heart rate down after it goes up like that is to recline. It sounds crazy, but until I got my HR app on my IPhone, I had no idea that it was my HR that was causing my symptoms. I thought it was my BP dropping. My heart rate was going sky high when I was sitting in the car and I didn't even know it! The phone app has been a life saver for me.

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I would say in many situations a monitor is not needed. I think the most usefulness would be to collect data to provide to her doctor if there is still something you are trying to figure out with medications or symptoms. I think focusing too much otherwise on the HR can induce anxiety. This is just my experience. I would talk to her doctor about the utility of monitoring the hr.

For me I don't think it was the heartrate per se that ever caused my symptoms. I think it was whatever it was (hypovolemia, pooling) that was making my hr fast and it was that cause that was making me feel badly. I also notice that sometimes my hr can be high but I feel fine and other times it is not too bad and I can feel poorly. Yes for me lying down or sitting down can bring my hr down. Also increasing fluid intake.

Hope she feels a lot better soon.

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I used mine more when they were tweaking my medications, and when I was exercising during that time, but I'm glad I have it. I also have a B/P cuff that detects irregular heart beat, which I am glad I have for my B/P issues and MVP. But like the moderator said, I can have symptoms with or without fluctuations. If I feel badly, I rest more, if I feel good I am more active. Keep on keeping on :) Make the best of every day!

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I think this is a very individual thing. It may make some people more anxious, and others more in control. I find that my heartrate monitor has been very helpful for me to figure out patterns about how my body is reacting at various times. I definitely have symptoms with or without the tachy (or brady heart rate), but I know that if my heart rate is tachy it can be an indication that something else is going on (with pooling, bp, etc), so I can stop what I am doing or make modifications so that the other symptoms wont necessarily follow (chest pain, pre-syncope, extreme fatigue). If I didn't have the monitor, I wouldn't likely be aware of the tachy until it climbed so high that the shortness of breath kicked in and at that point the the rest of the symptoms are already underway.

I am not obsessive about checking it at all, but I do monitor it when I'm on my recumbant bike, trying something new or feel horrible.

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I seriously looked into buying a hr monitor and compared brands such as polar etc. What I determined from the reciews I read is that those types of monitors wouldn't suit me well due to accuracy, convenience, price, and function. Instead I opted for a pulse oximeter like like kind used in the Dr.s office. I bought it off amazon for around 30 dollars. I chose this because it also shows oxygen saturation, and can tell me whether or not my shortness if breath is founded. Monitoring the pulse can be helpful, to gauge what your body is doing.

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Thank you to each of you for responding.

It sounds as though monitoring the hr may be a way to avoid a crash. Maybe.

Is the heart rate watch as effective as the heart rate monitor that you strap around your ribcage?

I had thought of the oximeter, thinking that focus, fatigue, etc. indicated low O2 to the brain. But would putting that on your finger give you a decent indication of low levels in the brain? And, am I getting this correct..... the oximeter ALSO catches the heart rate?

If your blood pressure standing is good (120s/80s) but the rate is 110 to 150), does that suggest hypovolemia? Do you need MORE salt then or MORE fluid then? OR could this be the addition and adjustment to the Effexor.

What is a mother to do? :wub:

Thank you for sharing your experience.

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I forgot to add.... the way I found out about the HR app for Iphone is from my doctor who is a long distance runner. It is very accurate, more so than my watch. I've checked it against the hospital's machine when I had the opportunity. Also, it's free. Here is the link in case anyone wants to download it. http://www.azumio.com/apps/heart-rate/

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My understanding is that the chest strap monitors are much more accurate. I have a Polar one - the most accurate I could find.{It was actually a gift for my husband for doing P90X workout, but then I got sick and confiscated it}. I would say that it is accurate for me over 90% of the time (sometimes the strap just needs to be adjusted). When I get many irregular beats or heart spasms the monitor can't read it at the time, but overall it is consistent with how I'm feeling and I have checked it against my bp monitor and it's been accurate every time.

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I swim at rehab, where they use an oximeter to check on both oxygen and hr. It's really easy to be in the pool and just stick out your finger to get things measured when necessary!

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I personally like having data, although I now only get my HR when I'm seriously symptomatic, and I do it just by doing a pulse at the wrist. My doctor, on the other hand, thinks that there's not much to get from keeping an eye on one's HR; she says that it's more worth it to just look at how you're feeling. Like other folks have said above, sometimes it's helpful to know *how* my HR is doing when I'm feeling ucky, but I don't think I'd do anything different myself; just good to know. If you're starting something like a beta blocker to slow the heart rate, it's a different story, since at that point you want to know whether it's doing anything.

(I've heard that the chest straps are quite a bit more accurate than the wristwatch type, but that some folks find them uncomfortable, and that the main reason they're more accurate is that they work better under heavy exercise like running, which I personally can't do)

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I have a polar hr monitor with a cheststrap. I LOVE it because it suits my personality. I'm the type that will push until I crash. I'm very goal oriented and that has gotten me into a lot of trouble with my health issues.

I set a "workout" zone on my heartrate monitor. It automatically beeps (a sweet bird-like chirp) when I'm at the upper limit of my heartrate setting. This helps me to know when I'm pushing too hard and reminds me to take a break and lay down. Knowing that it will beep automatically when I'm getting too tachy gives me the freedom to not get obsessed with checking it all the time. The point is to get something that will not be distracting or counterproductive to your individual situation.

Sorry I don't know the answers to rest of your questions but best wishes in your search!

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I love the Polar HR watch. I admit that I was too focused with my HR for a couple of yrs after getting POTS, but then I went away for the wknd and forgot my HR watch and learned that I can survive without it. It takes a while getting used to and you can pick up stray electric signals which wind up giving you wrong readings. You have to learn to ignore that bc it can be scary. If you wear it long enough you can figure out your HR by feeling your wrist and don't need it anymore. It is a fabulous tool for prevention/managing. Like i take beta blockers as needed and if my HR is a certain number i know to take the meds, and i can see my HR slow down. It's great for exercising too, so you know not to push too hard. I would recommend getting one unless you think she will obsessed. The Polars are ECG accurate.

Edited by yogini
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You really need this kind of thing for patterns, whether you're looking at blood pressure or heart rate. There are certain things you'll find during the day to raise or lower one or the other of those and if there is anything volitional which raises or lowers it to a more desirable number (like lying down, using a/c, or whatever it is), then when there are things you can't control (time of day, time of month, whatever else), you can try to do one of the things you can control which gets it to a better number.

Even if you have a machine which isn't wonderfully accurate, you get a general sense of how it is inaccurate and how you feel for numbers on the machine. The numbers shouldn't be scary. Generally, they are informative. Occasionally, you'll say yikes but the knowledge is never scarier than the sensations of the disease.

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Yogini brings up a good point. I also became neurotic with my hr monitor. I think that there is something reassuring about it because it let's you know all of those feelings in your body that tell you that you are dying aren't real. In that, it can become an addictive reassurance. There were many a time I didn't have my hr monitor and began to panic-- it was like being separated from my teddy bear when I as little or something :)

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I agree with SoliDeoGloria . I have a Garmin HR watch with a cheststrap. I've set my watch to beep at a certain heart rate, so I can just start up an activity and go about what I'm doing without having to press buttons or become too focused on it. I don't have it on me all the time though. I'll put it on if I'm going to my family's house, exercising, working in the yard or running to the store for something. I like to know what is going on while I'm not home or doing some strenuous activity, so if something bad starts to happen, I can see it right away and know to sit down/relax. Without it, I tend to overdo things all the time. My HR can be 170 and Ill just keep going because I'm apparently sadistic...lol :lol:

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I used to be obsessive with my iPhone HR and then I bought one of the BP monitor that also attached to my iPhone. Then I was hospitalized from nov. to New Years- I'm pretty good at recognizing my symptoms so I don't use it as much. I would say its a good idea to have one. I still check my BP every morning- before meds- and that gives me a hint. I feel horrible today and woke up lying down with 50/33 and 168.

My guess would be that she will use it less as she learns her cues better. That said, I'm still bedbound so once I'm able (EVER) to get get up and walk and exerciseim sure I will use it all the time again.

Jen

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Thanks again for your responses!

My neighbor is letting me borrow her oximeter for a couple of days. Fascinating. DD babysat a 2 1/2 yo Sunday mid afternoon for a couple of hours and then again that evening. The little one fussed and screamed and cried for an hour as her dad was getting ready to leave. DD couldn't even put the girl to bed because of the shear exhaustion that hit her so I helped with that. She did PT yesterday and had to go slower than normal. She crashed in the car on the drive home and again at home, napping for the first time in 3 weeks since starting Effexor. I used the oximeter and my BP cuff. BP was ok. Rate was ok. O2 was ok. But I noticed as she was awake/half asleep that the rate would vary 10 to 15 bpm.......62 up to 71 down to 63 up to....... dysautonomia, right?? Or maybe its EDS fatigue. Or maybe it's........

I know that POTS/NMH causes fatigue. I know that EDS causes fatigue. I understand that some believe that the 2 are intertwined and some link them both to CFS. Can you become symptomatic dealing with a demanding toddler?? I suspect that little kiddo was the icing on an enjoyable 5 days. Nothing dramatic but something went on each of the previous days. Folks mention the importance of pacing oneself. I didn’t think it had to be done so gingerly.

So, I ordered an oximeter and 2 books that will address EDS and also the POTS/NMH components. I am flying blind here and simply need more resources on hand, including this great board. I need to have a better understanding of what's going on and I need to walk thru the reality check that this is going to be more complex than putting a SpaceX Falcon 9 into orbit. <_< ie. mom can't fix everything. At least not right away ;) . That's a tough pill to swallow.

Thanks for the help and encouragement! The monitor suggestions are being tucked away for future reference.

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Yes.... any kind of stressor can cause one to become symtomatic be it physical or mental.. I call it to my flight or flight response being kicked into overdrive, after that, the symptoms follow. I don't know if everybody is that way, but that's how my body responds.

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I used to be obsessive with my iPhone HR and then I bought one of the BP monitor that also attached to my iPhone. Then I was hospitalized from nov. to New Years- I'm pretty good at recognizing my symptoms so I don't use it as much. I would say its a good idea to have one. I still check my BP every morning- before meds- and that gives me a hint. I feel horrible today and woke up lying down with 50/33 and 168.

My guess would be that she will use it less as she learns her cues better. That said, I'm still bedbound so once I'm able (EVER) to get get up and walk and exerciseim sure I will use it all the time again.

Jen

IPhones has a BP app? Do you know the link? I'd like that... So easy to walk around with your phone!

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