Anyone have a cardiac event monitor or loop recorder?

[Don]

I’m having random runs of tachycardia.  My HR can jump from 50-175-70 within a very short period of time.  I also have bradycardia down to 30.  That’s the lowest I’ve seen.  Highest is 200+.  My neuro and PCP are concerned as am I obviously.  Cardiology mentioned SVT and IST.  Some other acronyms I don’t recall.  My neuro and PCP wanted me to inquire about an implanted monitor device.  I wore a holter for 24hrs but it only showed the bradycardia, some PVC’s and extra beats.  I didn’t wear it long enough.  My other doctors want more data.  I have an appointment with cardiology tomorrow.  Im going to meet with the PA and EP to discuss the device.  To those of you that have such a device, how did it go? Thoughts and experiences?  

[StayAtHomeMom]

I have seen and heard of people wearing a Holter monitor for up to a month. Is the issue more it just can't catch it? How quick is very quickly?

Do you have any warning symptoms? If so can't you just get something that monitors at the drop of a hat?

"Implanting a device" sounds scary to me. At least the Holter can easily be removed. What is the name of the device/procedure? Curious for my own knowledge. I have never heard of it. 

[Pistol]

@Don - yes, I had an implanted Loop recorder ( ILR ) from 2013 until 2016. It was implanted to determine whether my syncopal episodes were due to drop in HR. I had had several regular holter monitors before that. I absolutely LOVED having the implanted one for several reasons: it monitors every beat and records abnormal ones even when you are asleep or do not feel them. And you have a handheld device that you can push a button on to mark an event when something happens. The regular holter monitors only recorded an event after I pushed the button, so AFTER the syncopal event happened. The ILR records backwards, so when I had an event I could push the button after I woke up and it recorded 5 minutes before I pushed it. That way the cardiologist could see what happened leading up to the event, not after it. The way to send the data to your cardiologist is very easy, over the phone. If you have questions about a specific event you can call the cardiologist and they tell you about it. --- The device itself is very small, like a small lighter, and the surgery is extremely easy, no pain, just some tenderness after. Once you have it there are no limitations in activity or such, you don't even feel it. In has a battery lifespan of 3 years and when mine ran out of juice I had it removed in an even easier surgery. --- I see only benefits from ILR's - there is no better way to keep track of what is going on with your HR!  If you have any other questions about the ILR please feel free to contact me!

[Scout]

@Don We sound quite similar. I have been wondering lately how common erratic heartbeat is for folks with autonomic dysfunction. Mine bounces all over the place and the best way I can describe it, is my heart seems "confused". Fast... slow... super fast... super slow... repeat. All in the space of seconds. 

I second what @Pistol has said. I haven't had the device implanted myself, but I have heard only good things, and that the surgery is to implant it is minimal. It will likely be hugely beneficial for you and your future treatment. 

I keep having the same issue with a holter, in that it's only such a short period of time. I might go days with nothing, and then suddenly have a lot of episodes at once, when not wearing the monitor.  Sure is frustrating. 

[Don]

35 minutes ago, Scout said:

@Don We sound quite similar. I have been wondering lately how common erratic heartbeat is for folks with autonomic dysfunction. Mine bounces all over the place and the best way I can describe it, is my heart seems "confused". Fast... slow... super fast... super slow... repeat. All in the space of seconds. 

I second what @Pistol has said. I haven't had the device implanted myself, but I have heard only good things, and that the surgery is to implant it is minimal. It will likely be hugely beneficial for you and your future treatment. 

I keep having the same issue with a holter, in that it's only such a short period of time. I might go days with nothing, and then suddenly have a lot of episodes at once, when not wearing the monitor.  Sure is frustrating. 

My wife is actually a cardiac nurse on a telemetry floor.  I showed her my heart rhythm on my monitor...it’s like chaos.  Up down up down....

[Anamaria]

I had to wear my holter for over a month for them to really catch anything significant. It showed exactly what you described where it goes super low then really high. I just met with PA att EPs office today and she said if it continues to happen she wants to put another holter on me again. 

[Always hoping]

I had a loop recorder implanted about 5 months ago.   I agree with Pistol, so far it has been very easy and benefical.  I had a 24 hour and 30 day monitor where of course nothing occurred while I was wearing them.  After an episode of most likely SVTs and other craziness we decided to go with the implant.  Thankfully I haven't had another SVT episode since the implant but it has been a great learning tool for me and my doctor.  Mostly palpitations, PVCS and PACS.  Good luck.

[Don]

Hi all. I talked to my EP this morning.  He agreed to an implanted device.  I think my diagnosis is Tachy/Brady Syndrome.  I get my device next Monday.  I’m kinda relieved, kinda nervous about what it shows.  But I want to know.  This is all a bit overwhelming.  😥.  

[StayAtHomeMom]

2 hours ago, Don said:

Hi all. I talked to my EP this morning.  He agreed to an implanted device.  I think my diagnosis is Tachy/Brady Syndrome.  I get my device next Monday.  I’m kinda relieved, kinda nervous about what it shows.  But I want to know.  This is all a bit overwhelming.  😥.  

Thanks for the update. Knowledge is power. The more you know about what your body is doing the easier it will be to try and control it. Good luck and I hope all goes well. 

[Pistol]

@Don - I am glad for you. It is so scary not knowing what is going on within your body. It will be a great relief knowing what is happening - even if it is not so good. You will - hopefully - soon know what is going on, find answers and then a treatment. And - do not worry about the procedure itself - it really is simple! Best of luck to you!

[Don]

I’m getting a LINQ device.  I researched it. It looks promising.  Anybody have any experience with these?  

[Roxy]

I have had my LINQ ILR for around 2 years and it has been a god send. My doctors have been able to see everything I was telling them was happening but sounded unbelievable. The placement of it was relatively easy, I had to have general anesthesia because I am alllergic to locals, I would do it again in an instant. Good luck

[Don]

Hi all.  I got my LINQ placed this morning.  The lidocaine injection was the worst part.  The actual placement was easy. I got a few stitches.  Overall, not too bad.  Now I want my cardiologist to see what I see.  When I described my events, the general consensus was that I was having what sounded like Brady/tachy syndrome. They also thought I was having short runs of SVT.  We’ll see in time.  Now I just want to catch it.  

[Anamaria]

53 minutes ago, Don said:

Hi all.  I got my LINQ placed this morning.  The lidocaine injection was the worst part.  The actual placement was easy. I got a few stitches.  Overall, not too bad.  Now I want my cardiologist to see what I see.  When I described my events, the general consensus was that I was having what sounded like Brady/tachy syndrome. They also thought I was having short runs of SVT.  We’ll see in time.  Now I just want to catch it.  

This is awesome Don! I’m going to ask on Wed. If I would be a good candidate for this. 

[Peter Charlton]

Hi Don, I have the Reveal Linq device, since January or February 2017.

They told me that it detects events and sends them automatically, I am not convinced it does this, you can press the button in the afternoon and it tells you when it last sent, sometimes I have bad events that I get a telephone call from the hospital about, but its never as a result of the machine working automatically, I almost always have to use the keyfob, then download manually using the brick.

I already had my own ecg, (see one of my tracings from it below), I get so many palpitations that I would be bothering them all the time so I use my ecg to see how bad it looks, when its bad I use the keyfob.

[MikeO]

I have a ILR implant as well. So far i am on the fence with this thing. The defaults are set a bit high (i am told this is to minimize false positives - i get it). My device will only monitor for aFib, tachycardia, bradycardia and heart pauses. I know i don't have any bouts with aFib (would have shown up with past monitoring).

Just like @Pistolonly thing I have seen is the tachycardia when my bp drops and i go down but, i still have to push the record symptoms on my phone and if i can scramble to take a blood pressure reading. We already know the tachycardia happens.

This still might be worth it for my full syncope episodes as i normally can't remember anything prior to the event i just don't trust the trigger thresholds that are setup.

I did put in an inquiry as to lowering the heart pause threshold. I suspect on the bad days i feel more of these even though they are mild (less than 3 seconds). From a cardiology perspective i sure the request will be denied

 

[MikeO]

Well Thursday i put a request to get this ILR taken out of me. I no longer WISH to have it in me. It has been in for almost a year and has served it purpose and proved i do not have a heart arrhythmia. Down side device management and even my faint team seem to stick their head in the sand especially when i send in events. apparently beating at 130 bpm while just trying to move is not a concern even at my age. all i can tell you at that heart rate i am on the floor. I am just disgusted.  

[Sushi]

Have you considered getting a Kardia external event recorder? They are widely accepted by cardiologists as reliable and very easy to use—you only need the very small device and a smart phone or tablet. They computer-diagnose 6 types of abnormal patterns and you can easily email the ECG to your doctor. My cardiologists have really appreciated receiving Kardia ECG strips. As far as pauses, I had no idea how many I was having until I got a pacemaker—what a relief! 

[MikeO]

2 minutes ago, Sushi said:

Have you considered getting a Kardia external event recorder? They are widely accepted by cardiologists as reliable and very easy to use—you only need the very small device and a smart phone or tablet. They computer-diagnose 6 types of abnormal patterns and you can easily email the ECG to your doctor. My cardiologists have really appreciated receiving Kardia ECG strips. As far as pauses, I had no idea how many I was having until I got a pacemaker—what a relief! 

I do have a Pulsebit EX event recorder. It has been my sanity check! I have sent in strips with it before. I have seen data from the pacemakers before i am sure it has helped you immensely.

[MikeO]

Well had the loop recorder taken out today. Was a bit of a tug to get it out but went well. Still i am not happy with the lack of acknowledgment with the elevated heart rates causing issues. there was also a note about anxiety as the reason to have this thing removed which i totally reject. bottom line it did not prove its worth. 

[RecipeForDisaster]

5 minutes ago, MikeO said:

Well had the loop recorder taken out today. Was a bit of a tug to get it out but went well. Still i am not happy with the lack of acknowledgment with the elevated heart rates causing issues. there was also a note about anxiety as the reason to have this thing removed which i totally reject. bottom line it did not prove its worth. 

I hate when people say stuff like that. I’m glad I didn’t get one, although I was encouraged to at times… I mean, I showed tons of PVCs, V-tach, and plenty of tachycardia on my 30 day monitors, so I think that’s enough.

[MikeO]

1 hour ago, RecipeForDisaster said:

I hate when people say stuff like that. I’m glad I didn’t get one, although I was encouraged to at times… I mean, I showed tons of PVCs, V-tach, and plenty of tachycardia on my 30 day monitors, so I think that’s enough.

I am just beside myself. I have had the same holters show the same thing this dang ILR has. I think i need to take a step back first before firing back. Word's can be mis contreuted. But i don't think this is the case for me. Might take a few beers and passing out to decompress Haha. I do think i do need to speak up.

[Pistol]

@MikeO  I had several halter monitors and an ILR ( for 3 years ). They all showed the same: Sinus tachycardia before and during events. Initially they were hoping to catch a sudden drop in HR so I could get a pacemaker, and I was dissappointed that nothing came of it. But my autonomic specialist explained to me that finding "nothing abnormal" is also a clue - meaning the tachycardia during symptomatic events is proof for dysautonomia. That in itself is a result. Now that we know that no abnormal rhythms are causing my symptoms we can concentrate on treating the cause - the ANS. 

[RecipeForDisaster]

1 hour ago, Pistol said:

@MikeO  I had several halter monitors and an ILR ( for 3 years ). They all showed the same: Sinus tachycardia before and during events. Initially they were hoping to catch a sudden drop in HR so I could get a pacemaker, and I was dissappointed that nothing came of it. But my autonomic specialist explained to me that finding "nothing abnormal" is also a clue - meaning the tachycardia during symptomatic events is proof for dysautonomia. That in itself is a result. Now that we know that no abnormal rhythms are causing my symptoms we can concentrate on treating the cause - the ANS. 

Oh yes, they really wanted me to pass out with monitoring so they could see that it was due to arrhythmia. I knew it wasn’t, partly because it was never sudden. Yep, sinus tachycardia every time. I’ve been an EMT since 1998 - I know rhythms. My heart rate goes up because my BP is down.

 

I've had my doctors notes say I’ve never passed out (um it’s like every other week and I would never say anything like that) and even, once, that I use adderall recreationally. If you count "prescribed with a prior authorization and taken due to very low BP and lack of sleep" recreationally, then sure. I was highly upset about that one. I take it like once a month anyway, because it’s hard to get the prior authorization.

[MikeO]

2 hours ago, Pistol said:

They all showed the same: Sinus tachycardia before and during events. Initially they were hoping to catch a sudden drop in HR so I could get a pacemaker, and I was dissappointed that nothing came of it.

All of my events were Sinus tachycardia as well but cardiology is not really concerned about that unless you are consistently hitting 160 or better which will never happen as i am beta blocked. I did give them a choice to keep this thing in but apparently someone else did not think there was any value in it.

45 minutes ago, RecipeForDisaster said:

I've had my doctors notes say I’ve never passed out (um it’s like every other week and I would never say anything like that)

The anxiety comment really put me off. I need to turn my Zen on. Water under the bridge.