Bradycardia And 30 Day Heart Monitor Questions.

[SpinnyC]

Hi- Just a quick background since I'm new here. I was diagnosed with POTS around the beginning of this year after going a few years with my symptoms undiagnosed/misdiagnosed. Now I'm on Midodrine which seems to be helping but they're still playing with the dosage to trying and find what's right.

I'm also supposed to be keeping a log of BP and HR readings. When I feel particularly bad it was almost impossible to get my bp cuff to give me readings because my pulse kept coming back with an error which would prevent the machine from giving any readings at all. So I got a separate HR monitor to try and figure out what was going on. During these episodes it's showing that my HR is jumping up and down from as low as the 30's to over 100. My hr doesn't stay in the 30's for more than 10-20 or 30 seconds and really just bounces from low to high to low again (usually back down to the 60's) and then back up to my "normal tachy range" but when it's happening I get gray spots in my vision and have very forceful heartbeats. I have no idea what my bp is at these times because the bp cuff won't register because of the hr.

My First question I guess is, has anyone else experienced this?

I called my cardio's office and they called back to say the doc wanted me on a 30 day monitor. So I went down the next morning to get set up.

I was supposed to be on a monitor that stayed on you with electrodes the whole time but when the nurse found out I was allergic to the electrodes she said she couldn't find the hypoallergenic kind and that I needed to use a monitor you hold up to your chest when you're experiencing symptoms.

Problem is, since I only see this really low hb for a few seconds I'm afraid I'll miss it by the time I get the monitor out of my pocket and up to my chest to record. I told her this and she said to try this one, and if it didn't work out I could switch to kind she was originally going to put me on.

So then I questioned if the two monitors recoded the same information. She said yes, the kind hooked to you only recorded when you pushed the button. But everything I've been reading says the event monitors that are hooked up to you keep a recording of a few seconds before and after you hit the button. Besides if the two monitors were exactly the same then what would be the advantage of switching to the hooked on monitor if this one doesn't work?

Does anyone know how the 30 day event monitors work?

And if the monitor you hold up to your chest is different from the kind that hook right up to your chest with electrodes?

This nurse also kind of had a bad attitude- at one point questioning how accurate my HR monitor was anyway. I told her I'd measured it against the monitor they have me on in the hospital at cardiac rehab and it was 100% accurate with what they were getting. She just smirked and shook her head like that didn't really mean much. Plus since I'm seeing gray spots and feeling really forceful heartbeats, it's not just like I'm seeing this low number but feeling totally fine.

I really love my cardio and usually leave the office feeling good about appointments but this time I left feeling like this monitor wasn't going to catch anything because this nurse just didn't want to be bothered with something out of the norm.

Sorry for the vent at the end here... I'm just tired of being treated like I know less about what I'm feeling in my body than so-called professionals. Irony is my cardio is one of the few docs I've seen who totally gets this and had been critical of other docs and how they treat POTS, so I guess I'm still a bit shocked to have had this experience with someone in his office.

Thanks for any information/insight you guys who've had 30 day monitors can provide!

[Relax86]

The only comment I have is to ignore people who smirk at you. But good luck with your testing. I did the monitor that you hold up to your heart back in 2004 and it did catch some things. I journaled if I was suspiciously feeling symptoms and when I was definitely feeling symptoms and it caught it all. The journal was the key. This was before my diagnosis and the only results I got was "yeah there were some abnormalities". I've had 1 other smaller bout of POTs since then but this January was my big one. Again ~ ignore people who smirk. I've been smirked at more this year then ever in my life and I contribute that to ignorance. Nothing will stop my from trying to get well. Good luck to you too.

[westernmass]

I think I've been experiencing something similar with the Brady and jumping hrs. I don't know exactly how accurate my monitor is but at the very least I'm having those jumps. Also bad chest pain and I've been having visual disturbances too, I like the grey spot description- I haven't been able to describe them well.

I have the same questions as you with regards to the holter/event monitors.

Sorry for the rude nurse, they can be a real drag. I like the advice above about ignoring drs who smirk.

Best of luck to you!

[ddschool]

I wore a 30 day monitor a couple years ago before I got my pacemaker. First, I'd call the monitor comp & ask if they have any patches for sensitive skin-I had to do that & they mailed me some.

Second, go to a home med supply store & ask for stuff called Skin Prep. It comes in a box of little individual premoistemed swabs-apply that to your skin, let dry, then apply your patches. It creates a barrier & you'll have let irritation.

Third, I had a monitor that would record if I pushed a button, or if it sensed that my hr was low. Once I had 3 events, I had to call in & send it in over the phone line like a fax. This is how I found out my hr was 37 at night, or would drop while I was emptying the dishwasher.

Finally, stand up for yourself! Because if you don't, no one else will!

I hope this helps!

[Lemons2lemonade]

I have been watching my heartrate for a long time, and the only time it ever got into the 30's was when i was on midodrine.

[ddschool]

Yep, that too, that's why I ended up w/ the pacemaker also so the doc could push my dose of Midodrine-didn't work. I started getting bad headaches around 125/85.

[SpinnyC]

Hmm.... very interesting about the Midodrine! Before being on any meds I did a 24 hr holter and it showed only a hr down into the 50's (not sure if that was when I was asleep or not). But the way I feel when I've seen the hr monitor jump down into the 30's feels new (like a more intense version of some of my symptoms) and has only been happening in the last month or so- which is why I called the cardio doc.

But a little over a month ago was the last time they up'd my Midodrine dose.

When that was happening to both of you did it stay in the 30's or did it jump around? As far as I can tell mine only seems to stay that low for 10-30 seconds then jumps way up to like 90's- 100's.

[westernmass]

Interesting... I'm also on midodrine and upped my dose about a month ago... I see the cardio weds I will bring this up.

[ddschool]

My hr would be in the 30s while sleeping, 40-50s while awake. When I'd increase the dose of Midodrine for my bp, it would in turn kick in my vagal nerve lowering my hr even lower (I could tell b/c I'd feel very weak, so I'd check my pulse & it would be 42). Also, one time I was trying to take a nap one afternoon & I felt these strong, weird palpitations. I hit the button on my monitor, & found out my hr was 41.

Yea, Midodrine is tricky if you already have a low hr.

[StephL]

Before I got diagnosed, the cardiologist that I saw was happy to inform me that a pulse in the 40s is NOT low enough to make me feel any different.

Now I have a BP machine and a couple of pulse readers, when I'm at my sickest is when I can't get my heart rate out of the 40s. I typically stay in the upper 40s to lower 50s but when it starts getting below 45, I am miserable.

I agree with the sentiment of you taking charge. It was the only way I was diagnosed and since then I've gotten sicker instead of better so I know it's time for me to step up and figure out what is going on again. What I am doing is making a list of tests I want done with links to why I want these tests performed, and taking all that to my doc. No one in my area, that I can find anyway, knows about dysautonomia so my family doc has agreed to learn about it along side me. That makes him pretty accomadating to my needs.

[SpinnyC]

Thanks so much for relating your experiences. My hr is usually on the higher side- normal resting for me now that I've been on Midodrine is anywhere from 70's to 80's, and as my doctor put it- that's amazing considering I was hardly ever lower than 100 just sitting (sometimes as high as 120). So seeing 30's even just for a few seconds, coupled with the feeling in my chest whenever it happens just doesn't seem right. Even if my hr monitor isn't accurate (although I'm pretty sure it is) there's something happening when I get that feeling that's causing it to show a number that low.

Anyway, I took all your advise and called the office today. I asked the nurse very specific questions about how the monitor attached to your chest worked vs the monitor you hold up to your chest. When she confirmed that the monitor attached to your chest all the time would in fact be capturing more data than the one she gave me (which is absolutely not what she said when I asked her about it in my first appointment). I told her I didn't feel this was working and I wanted a monitor that was attached.

She definitely didn't sound happy about it- but oh well, she wasn't very helpful or happy the first time anyway. Tomorrow morning I go to have the monitors switched. I'm not sure if the electrodes they'll have tomorrow are hypoallergenic or not but I can do something about that myself if I need to (thanks photographerrn for that info).

If the monitor shows that my hr really is getting that low I'll definitely be asking if Midodrine could be the cause.

Thanks Everyone!

[ddschool]

No problem! Hope you get it resolved today.

One thing I've learned is people don't understand what it is like to be sick, esp to have what we do. It is frustrating that we feel bad, but when med staff doesn't help us, it makes it worse. The worst part is, I am a nurse & I know too much for my own good

If that nurse is still giving you a problem, talk to the office mgr- you don't have to put up w/ being treated like that when you are trying to get to the bottom of your health problems.