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Don

Anyone have a cardiac event monitor or loop recorder?

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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?  

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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. 

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@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!

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@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. 

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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....

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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. 

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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.

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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.  😥.  

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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. 

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@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!

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

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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

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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.  

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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. 

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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.

Show this one when oxygen is 89%.jpg

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