Zio Patch

[Wanderland]

Hello! I get to start wearing my Zio monitor for the next 2 weeks, starting tomorrow!

 

I'm trying to think of the most respectful way of saying this...but can anyone with prior heart monitor experience help me understand what would show up as "significant" on the results? 

 

I'm not trying to game the system! While I've been waiting for this appointment to come around I've realized how much in my life I've already adapted over the last 7 years of symptoms to reduce the likelihood that my heart rate will rise and fall. This would include things like modifying exercises, resting after standing for long periods like taking a shower, taking an hour to adjust to being awake before jumping out of bed in the morning.

 

My new cardiologist automatically said I fit into some dysautonomia category, and I'm previously diagnosed with orthostatic intolerance. We just need to see what my heart rate is actually doing.

 

I'm just worried that if I do my "normal", this heart monitor isn't going to show anything as being significant, or what feels relatively significant for me is not significant enough for a heart monitor. I want to give my cardiologist an authentic picture of what I feel my heart rate is doing. If I don't meet criteria for POTS, that's fine!  I just have the concern that I'll come across as complaining that my heart rate rises and falls, especially during exercise, and then my doctor will say "Nope! That's normal on your heart monitor, you're fine!"

 

[RecipeForDisaster]

I wouldn’t get my hopes up that something helpful will be seen. I guess you don’t want it to… I’ve worn these for a month at a time 3 times, and my HR hit 180+ from walking around the first time… no one was concerned. They won’t be able to see what you’re doing or the position you’re in, although you can hit the button and record that info in the diary. They are usually looking for arrhythmias and really out of whack rates (although I am surprised 180 doesn’t qualify). I had a lot of PVCs, and they did care about that. I also had a run of ventricular tachycardia, and bigeminy. Again, those got their attention, but my usual dysautonomia stuff was not really of interest to them. YMMV!

[Wanderland]

Got it. So overall it really won't matter what my heart rate is doing. I do have an arrhythmia, but that is such a rare thing. I wonder why it even gets used for a potential POTS diagnosis if the bpm isnt enough to be flagged?

 

Makes me wonder what my cardiologist hopes to get out of it. 7 years ago I did the treadmill stress test and momentarily blacked out but my heart rate was "normal" so that cardiologist said "it must be because you got overheated that you blacked out". 6 years ago I did a tilt table test and blacked out around minute 16 but my heart rate didn't do what was considered typical for a POTS patient so cardiologist #2 said "you have orthostatic intolerance". Now I'm on to cardiologist #3 and I'm doing the treadmill stress test again plus the 2 week heart monitor.

I wouldn't be surprised if I end up being in the same "general dysautonomia" and "orthostatic intolerance" category again if nothing really is noted on a 2 week heart monitor. My heart rate doesn't usually get above 145 before it drops to 35 bpm. It's happens quickly for me, but usually if I stop whatever I'm doing and rest for a couple of minutes it goes back into a normal range. So I know I'm not as severe as what some people may experience, but now I question on how the heart monitor is helpful from a data perspective. 

 

[RecipeForDisaster]

19 hours ago, Wanderland said:

Got it. So overall it really won't matter what my heart rate is doing. I do have an arrhythmia, but that is such a rare thing. I wonder why it even gets used for a potential POTS diagnosis if the bpm isnt enough to be flagged?

 

Makes me wonder what my cardiologist hopes to get out of it. 7 years ago I did the treadmill stress test and momentarily blacked out but my heart rate was "normal" so that cardiologist said "it must be because you got overheated that you blacked out". 6 years ago I did a tilt table test and blacked out around minute 16 but my heart rate didn't do what was considered typical for a POTS patient so cardiologist #2 said "you have orthostatic intolerance". Now I'm on to cardiologist #3 and I'm doing the treadmill stress test again plus the 2 week heart monitor.

I wouldn't be surprised if I end up being in the same "general dysautonomia" and "orthostatic intolerance" category again if nothing really is noted on a 2 week heart monitor. My heart rate doesn't usually get above 145 before it drops to 35 bpm. It's happens quickly for me, but usually if I stop whatever I'm doing and rest for a couple of minutes it goes back into a normal range. So I know I'm not as severe as what some people may experience, but now I question on how the heart monitor is helpful from a data perspective. 

 

For me, yeah, not really. I think it it was too slow, they would have been impressed. I think they are more ruling out dangerous stuff, at least in my case. Without having data showing whether you’re standing or sitting, I can’t imagine they could use it for POTS. I bet they’d be excited about a HR in the 30s, particularly if it’s a big, dramatic drop like that!

 

I don’t have POTS, but do have HYCH, formerly known as just dysautonomia, orthostatic intolerance, etc. They diagnosed this with cranial Doppler during a TTT. I had 2 inconclusive TTTs before that… I didn’t pass out during them, but I usually don’t when I am stressed from the trip to a big city, parking woes, etc.

[MikeO]

21 minutes ago, RecipeForDisaster said:

For me, yeah, not really. I think it it was too slow, they would have been impressed. I think they are more ruling out dangerous stuff, at least in my case. Without having data showing whether you’re standing or sitting, I can’t imagine they could use it for POTS. I bet they’d be excited about a HR in the 30s, particularly if it’s a big, dramatic drop like that!

 

I don’t have POTS, but do have HYCH, formerly known as just dysautonomia, orthostatic intolerance, etc. They diagnosed this with cranial Doppler during a TTT. I had 2 inconclusive TTTs before that… I didn’t pass out during them, but I usually don’t when I am stressed from the trip to a big city, parking woes, etc.

I just wonder how many folks get a positive TTT test when the reason is really being diabetic and the results are from no carbs for twelve hours.

My blood sugar must be low right now, i am being negative again.

[Pistol]

On 12/28/2022 at 10:10 PM, MikeO said:

I just wonder how many folks get a positive TTT test when the reason is really being diabetic and the results are from no carbs for twelve hours.

There are distinct EKG changes that happen with autonomic instabilities that would not be present with hypoglycemia, so they should know to differentiate.

[Sushi]

On 12/27/2022 at 5:50 PM, Wanderland said:

I wouldn't be surprised if I end up being in the same "general dysautonomia" and "orthostatic intolerance" category again if nothing really is noted on a 2 week heart monitor. My heart rate doesn't usually get above 145 before it drops to 35 bpm.

Jumps from 145 to 35 might indicate Tachy-Brady or Sick Sinus Syndrome. I got that diagnosis, followed by a pacemaker, but I also showed chronotropic incompetence or the HR not reaching normal levels to support the exercise I was doing (treadmill stress test). What sort of arrhythmia do you have? I just had an ablation for arrhythmias and it has also helped orthostatic intolerance very noticeably.

[Sushi]

56 minutes ago, Wanderland said:

I am not sure what type of arrhythmia I have. I just know from my 1st stress test that I have had one since birth,

If you could find that in your medical records, that information might be helpful now. Arrhythmias are electrical disturbances, not physical abnormalities, so many factors can influence them. General Dysautonomia doesn’t sound like a diagnosis you would get from an autonomic specialist. A more precise diagnosis might point you to a treatment that could help. I have orthostatic intolerance but my Dysautonomia specialist narrowed it down to neurally mediated hypotension with the parasympathetic system trying to take control. This pointed to a treatment that helped a lot. Hope you get more clarity as to what is happening.

[Wanderland]

Who do you typically see as a Dysautonomic specialist? I've had 3 cardiologists, endocrinologist, allergist, sleep specialist, natural medicine doctor, dermatologist, neurologist, and my primary general doctor. So I'm just going off of the information they've told me.

[Sushi]

18 hours ago, Wanderland said:

Who do you typically see as a Dysautonomic specialist? I've had 3 cardiologists, endocrinologist, allergist, sleep specialist, natural medicine doctor, dermatologist, neurologist, and my primary general doctor. So I'm just going off of the information they've told me.

The main reason to see a Dysautonomia specialist is because they can put everything together looking through the lens of Dysautonomia, drawing on their experience of seeing hundreds (and often thousands) of patients with similar problems. The autonomic nervous system is complex and a specialist will be following the latest research. I had seen a number of cardiologists before finding an automatic specialist and the difference in their approach was impressive. My autonomic specialist was able to analyze my tilt table test (and other forms of autonomic testing) correlating my responses second by second and coming to an understanding of what my autonomic nervous system was actually doing in different situations. 

[Wanderland]

I might look into that depending on what comes out of my remaining testing. My neurologist referred me to one but it was peak 2020 time in Chicago so the wait time was so long to even try to talk to someone about scheduling an appointment so I lost motivation. Is it something worth pursuing even if I don't meet criteria specifically for POTS?

[Sushi]

On 1/5/2023 at 9:53 AM, Wanderland said:

I might look into that depending on what comes out of my remaining testing. My neurologist referred me to one but it was peak 2020 time in Chicago so the wait time was so long to even try to talk to someone about scheduling an appointment so I lost motivation. Is it something worth pursuing even if I don't meet criteria specifically for POTS?

I’d say particularly if you don’t meet the criteria for POTS—I don’t either but a specialist was able to tailor treatment for what I DO meet the criteria for. Sorry to say, but there is almost always a long wait to see a Dysautonomia specialist as there are so few of them,

[MikeO]

14 minutes ago, Sushi said:

I’d say particularly if you don’t meet the criteria for POTS—I don’t either but a specialist was able to tailor treatment for what I DO meet the criteria for. Sorry to say, but there is almost always a long wait to see a Dysautonomia specialist as there are so few of them,

I don't meet the criteria for POTS either but as @Sushistates and @RecipeForDisasterqueued in on treatments at least for OI or OH and even nOH or even POTS are similar. It does help knowing what does bother you is therapeutic. like stated there are few and between Dysautonomia specialists to help and even saying this may not give you answers. 

[Wanderland]

You're all so very right. I know quite a few people with POTS and finding a specialist is always a challenge so I figured it might be even more challenging if I was trying to find something different from POTS

 

 

 

 

 

[Sushi]

20 hours ago, Wanderland said:

I figured it might be even more challenging if I was trying to find something different from POTS

I don't think so as an autonomic specialist will be up on all the various forms of dysautonomia whereas few cardiologists are (unless they specialize in the autonomic nervous system. There are tests that differentiate different forms of dysautonomia but it is doubtful that you will find them outside of the practice of an autonomic specialist.

[Mbrown]

I have just applied my Zio patch and was wondering the same thing. This thread is helpful. 

[Water Lover]

For others who find this thread, I'll sort of echo RecipeForDisaster's experience that they seem only to be looking for particularly dangerous stuff, but my own experiences give it a bit of a positive spin: I'd just say, don't be too worried about what the Zio does or doesn't show.

While undiagnosed, I was referred to a cardiologist for my tachycardia. I wore a Zio for a week and had a stress test. I also had some anxiety about wanting my Zio data to be significant, and my heart actually cooperated—I had unusually frequent presyncope and some notable high HR and chest pain incidents that week. All that amounted to nothing, but ticking that box apparently cleared enough other things out of the way to put me in the position to get diagnosed.

Both the monitor and the stress test came back basically unremarkable: my cardiologist acknowledged that my HR was sometimes elevated, but said my averages were within range for my age and there were no significant arrhythmias. (I was really taken aback by his disinterest in the high HR itself: I was already above 130 when I *started* my stress test, from no activity! That apparently wasn't cause for concern.)

So the Zio basically produced no information and was part of the conclusion that there are no issues with my heart itself. But the follow-up from that is what led directly to my diagnosis: in our follow-up discussion I talked about presyncope, as well as thirst and habitually consuming large volumes of water, and speculated on standing as a trigger, and those factors led my cardiologist to suggest POTS and eventually led to my getting a TTT and a POTS diagnosis. The monitoring, in my case, basically seems to have been a simpler box to check which allowed us to move on to more complicated things.