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Avatar universal

Impantable loop recorder or 30 day event monitor

Hi Everyone! I’m female, about 120 lbs, 5.4” tall. I’ve had Syncope and pre-syncope since my early 20’s and I’m 35 yrs old now. I’ve had 4-5 of these/year but this year I’ve already had 4 pre-syncopes and  one full blown Syncope. During these episodes I have: Extreme nausea, palpitations, ringing/ buzz like sound in my ears and then no sound at all, feel hot and sweaty and then cold after it passes,etc..I usually know I’m going to faint because of these symptoms but I  have also fainted sometimes with no previous warning or presyncope.
I’ve also had 2 episodes of very severe palpitations which lasted for 15-20 min just after I had started mild exercise ( Felt as if my heart was in my throat).  I have never taken this very seriously until recently because I’ve been diagnosed with Fibromyalgia for pain in my back and arms and I started swimming as recommended by my Rheumatologist but now I’m scared to get into the pool.
On a daily basis, I feel extremely fatigued, dizzy, dis-oriented, sometimes short of breath after even slight activity. I have been recording my vitals recently. I have low normal BP of 90-100/60-70, Heart rate while sitting is in 80s and on standing is from upper 90s to sometimes in 120s. My Cardiologist said that I might have Neuro=cardiogenic Syncope but I had a negative tilt-table test result and normal Echo and Stress tests. So, now he is  suggesting an implantable loop recorder since my syncope is so infrequent but I got scared and asked for a 30 day event monitor instead. He has also referred me to a EP Cardiologist.
Now, I’m having second thoughts and thinking of getting the Implantable loop recorder instead of a 30 day event monitor  as I’m really desperate to find out what is wrong with me and just want to have a normal life and not worry constantly about fainting as I live alone. I’m really confused and would highly appreciate any input/suggestions on where to go from here.
Best Answer
1807132 tn?1318743597
It sure sounds like you have found a good EP who is going to work to figure this all out.  I wouldn't doubt that the stress you have been under about this has ramped up your symptoms.  I was getting episodes of tachycardia once every couple of weeks until the week before my ablation when I had 7 in the one week and a number of them lasted a few hours a piece.  I was extremely stressed about doing the ablation so the extra adrenaline is probably setting you off a bit more than normal.  I think once you get yourself looked at and have a game plan things will settle down and hopefully get fixed.  Best of luck and keep us posted on how it is all going.  
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Avatar universal
I have a 25 year old son.he was having a problem with his blood pressure an heart palputations. On november 6 of last year he had a loop recorder inplanted. Hes doing just fine.his blood pressure is normal. Hope the information helps you with making your decision.
Helpful - 0
1807132 tn?1318743597
I am so happy you are on the road to getting this under control  Whoo Hoo!!  You come back and keep us posted on how you are doing.  Don't be a stranger.
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Avatar universal
Hello everyone, I have been diagnosed with P.O.T.S.  I just wanted to post this update here, so that it might help someone else in the future who has my symptoms and help them get the right diagnosis and treatment and also wanted to thank everyone on this wonderful forum for all their help and support:)
Also, just wanted to add that I probably would have never been diagnosed if I hadn't caught my episodes on the 30 day event monitor..I had 4 episodes after I extended it for more time and recorded them on the monitor.
Thanks again!:)
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Avatar universal
Update:  Hi Michelle, Asked the EP for another 30 days on the monitor. He said that most likely Insurance will not approve as they only allow 1 time/year...got a call from his office just now and the Insurance accepted! I'm so happy..now I just need to faint! :)
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1807132 tn?1318743597
Not that they are trying to be rude but doctors can be super busy and have a tendency to rush sometimes so we really need to be very direct with them and know what questions we want to ask or they can take off quite quickly on us.  If you at all feel your doctor is not giving your case the attention it deserves then move on.  There are plenty of doctors out there.  Mine was quite nice and took the time to explain things.  He was very understanding when I went to him in a panic about my pvcs after my ablation.  He made it clear that they weren't dangerous but was compassionate about the fact that they can make people feel horrible.  But I have had my fair share of doctors writing me off so to speak and I really just got to a point of being pushy to make sure they knew that I had an issue that needed to be addressed.  So do go and see the other cardiologists and hopefully one will be a bit more attentive and by all means if you feel uncomfortable about any course of action speak up.  Remind the doctor if you spoke about something if they fail to bring something important to you up.  You can even call the office after the fact.  You have the right.  Just do what you need to do to take care of you. Ok, take care.  Keep me posted on how it is going.
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Avatar universal
Thanks for the reply Michelle! Yes, I'm so confused and frustated now. It's almost as if this EP doesn't want to look stupid because he had told me I have NCS before and I don't understand why he wouldn't do the ILR considering I get these presyncopes mostly while sitting doing nothing and I have had two negative TTT. It might very well turn out be NCS but other things do need to be ruled out first since NCS is a diagnosis of exclusion. Also, he had mentioned Midodrine for NCS last time and yesterday didn't even talk about it and just walked out of the room after a few mins. I think I need something like that for my low BP as I'm constantly tired and dizzy. I will also look into some BP meds that don't lower BP but regulate HR like you suggested.
I'm going to see two more Cardiolgists to see what they think. I need to pursue this for sure. I have been keeping a journal of what I ate, was doing when I had it the last few times. I will try to do the same things in the next few days..It's worth a shot!
Thank you so much for all the support!:)))
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1807132 tn?1318743597
How frustrating.  Do you have any idea if something in particular can trigger your syncope?  If so I would say try to provoke it if you can.  Unfortunately most of the time it doesn't work but give it a go.  Do whatever you can think to possibly trigger an episode.  If it does not happen then I would definitely talk to the doctor about your bp rate concerns.  I do believe there are certain types of bp meds that don't lower the pressure a lot but rather more regulate heart rate.  I would do some research on the meds to see what they all do and so you will be educated a bit when he starts talking about prescribing them.  Then I would most certainly keep on top of this.  Keep a detailed journal and then go seek a second opinion when you can list out when it happens, how often it happens, what you are doing when it happens, if anything triggers it.  Keep a diary of what you eat, how much sleep you get what you did that day so that you can track if it is possibly related to diet or what your physically do that day or the day before.  Unfortunately arrhythmias can be very elusive.  I had a holter my first try and didn't catch anything and didn't actually get it finally caught after 4 years so it can take some time but that doesn't mean you are out of options.  Just that you have to keep persisting at this time to get it diagnosed. And you are always free to go and see someone else for a second third or fourth opinion.  It is your life and your health so you just persist and you will reach a solution eventually, it is just sometimes it doesn't happen all that quickly.  Hang in there.  I am always here if you need to talk.  
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Avatar universal
I had an appointment with my EP today and he said that based on the 30 day event monitor, I have Inappropriate Sinus Tachycardia (IST). My heart tachys upto 160. He prescribed me 5mg of Bystolic (Nebivolol) to start with and will increase dose later if needed. He said that IST doesn't cause Syncope and there is something else causing it ( I haven't fainted still with the event monitor). I have 5 more days remaining on my 30 day monitor and after this he doesn't want to do Implantable loop recorder (ILR) as he thinks that I most likely have NCS/Vasovagal Syncope. He said that even though my presentation is not typical of Vasovagal Syncope, I'm too young to have V-tach etc and that I have a structurally normal heart. I asked him if I could have afib /SVT as the EP who did my TTT said that I'm most likely having Presyncopes and not a complete Syncope and it's quite likely I have an arrhythmia. He said that ..'Well, it has to be recorded first to confirm that'.
I feel quite frustated now because the EP who did my second TTT at a Teaching hospital said I most likely do not have Vasovagal Syncope and to do ILR if I don't faint with the 30 day monitor(Please see my post above to see his report).
Please help me..what should I do? I really want to find out what is causing my Presyncopes/Syncope. Also, I just googled Bystolic..and it's used to treat Hypertension, which means it lowers BP. I already have low BP (90-100 / 60-65) and feel dizzy, tired, have blurred vision all the time. Wouldn't this lower my BP even further?
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Avatar universal
Yes, the last few times I noticed that I was sitting and felt palpitations, got uneasy and therefore got up (because I felt so uneasy). It has happened while standing too but mostly happens while sitting. I'm really hoping I have atleast one episode with the 30 day monitor as I would like to avoid getting one implanted. Also, the EP Cardiologist who did the TTT today is different from my current EP Cardiologist ( The test was done at a Teaching hospital ). Let's see what my current EP has to say about all this. Thank you for all the support. Can't tell you how much I appreciate it :)
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1807132 tn?1318743597
I am wondering now if you have maybe have some sort of accessory pathway svt.  I know with my episodes, at least before I started to exercise regularly I would get very lightheaded and feel as though I might black out.  I had to lay down for fear of passing out but once I got some cardio in I was able to tolerate them quite well  But considering these seem to happen all of a sudden without doing anything it sounds like possible avnrt and maybe if you are jumping up once an episode starts it is causing you to near faint.  Gosh it would be nice if this turns out to be the issue because an ablation is a pretty easy fix for most people.  You do seem to have some extreme symptoms though but everyone is different.  At least you can now rule out dysautonomia.  To some degree this is a good thing because that can only be managed with meds.  I am hoping for a cure for you.  Anyways, your doctor does sound nice.  And it sounds like he will keep investigating until you get if figured out so hang in there.   Well I have my fingers crossed that you have an episode before you have to turn in the monitor so you don't need the implanted one.   Ok, onwards and upwards till a cause is found.  Hang in there.
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Avatar universal
Here's some update : Had my 2nd TTT today, upright for 20 min... after 10 min HR went up 23 bpm and systolic and diastolic BP went up too. The Cardiologist was talking to me the whole time about my history, so I was not quiet during it. He was more interested in the later part where they gave me Isoproterenol by IV. It was meant to increase my HR.. Tilted me up, heart rate increased till 150 and no symptoms/syncope or presyncope happened. Just palpitations/feeling of nervousness from Isoproterenol. The Cardiologist was very nice and he then went out of his way and gave me sublingual Nitroglycerine too ( He said ...Well! She is young but is obviously concerned about what has been going on and this her 2nd TTT..let's try Nitro also and maybe that will reproduce her presyncope/syncope). Nitroglycerine lowers BP... So, I was so confident I fill pass out or have some symptoms.. but nothing happened! No decrease in BP, HR went up by 21 bpm and I had no symptoms/pre-syncope at all!
I had a long talk with the Cardiologist during and after the test. He said that it doesn't look like I have NCS/Vasovagal syncope.... because all my symptoms usually start when I am sitting and people with NCS usually faint while standing. Also, in people with NCS, there are vision changes ( tunnel vision etc) and not the loud ringing in ears ( I never get tunnel vision but always get the ringing ears). Also, he said that I am not losing consciousness/having a complete Syncope because I know what exactly is happening to me... the ringing in ears getting louder etc. He said that I'm having pre-syncopes.
So, it's back to square one now :(

He has written in his report:

Conclusions:
Negative TTT despite paharmacological testing with Isopruel, then NTG.
Mild Postural orthostasis but not blood pressure seen.
Unusual story for vaso vagal syncope given that her onset of symptoms is while seated.

Recommendations:
Continue Ambulatory monitoring.
Consider loop recorder if no events occur on monitor.
Consider Neurological evaluation if monitoring during event is unremarkable.
Observe clinical course
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Avatar universal
Yes, I have been quite stressed out for these 2 weeks and maybe that's why more of these episodes. When I saw HR of 172, 157.. two days back, I called my Cardiologist's office and the nurse asked me to go to ER. That just stressed me out even more. I am feeling better after my appointment with the EP and hope this tachycardia/palpitations is just a passing phase and nothing serious :) The EP has asked me not to drive or swim (esp. alone) which is a bummer :( Hope I get some concrete answers soon with the 30 day event monitor and TTT and all this fainting can be stopped with meds.
The funny side to this is that anytime I don't pick up my phone, my friends are leaving messages like...Hey, did you faint? Call us or we are calling 911. Hahaha!
I'm glad I found this forum and have such nice people giving me some excellent advice! Thank you everyone :)
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Avatar universal
Hey Guys! Here's some update.. I saw the EP Cardiologist. He thinks I might have IST/ sinus tachycardia after I told him about my HR and palps. Of course he wants to see it on EKG first and not rely on home monitors. Also, I'm going to completely cut back/stop coffee and eat small meals to see if it makes any difference with tachy/palps..
Here's what he wants to do :
1. Another TTT with Isopro-atenolol . Yay! I was so happy that he wants this ( I didn't even have to ask).
2. 30 day event monitor, sometime next week or the week after ( he said I'm fainting quite a bit, so it's possible to catch it in the next 30 days if it's IST /SVT causing my fainting).
3. If unable to catch on 30 day event monitor and if I want he will give me the ILR. ( He was worried about scarring, it protruding out and showing because I'm on the skinnier side. I was like... what?.. I don't care!!! I am more worried about my well-being than a 1 inch scar) Are you serious ? hahaha
4. Florinex/Midodrine for NCS ( I have tried water, salt, juice..nothing works)

He thinks most likely its NCS because people with SVT don't faint that much. They mostly have presyncopes.The thing here though is that I haven't ever fainted this much before. Last year maybe 2 presyncopes and this year 1 syncope in Feb and the last 3 happended one after the other within 1 week.( which incidentally was the day I cancelled my appointment for the 30 day event monitor..can't believe my luck :))) The rest all were presyncopes. Also, sometimes I don't know if I have lost consiousness or not because I lie on the floor .I know what's happening to me.... I can still feel the increasing ringing in my ears till there's no hearing and then I just get up and I'm fine.So, I don't really know.
I will happily accept NCS but the severe palpitations in the pool for 10 min ( felt my heart was beating in my neck) and some years back another episode where the same thing happened for 45 min-1 hr after walking on treadmill just doesn't fit with NCS. That's what has me extremely concerned to be honest.
Have any of you heard of/experienced severe palpitations with NCS/ Vaso-vagal Syncope?

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Avatar universal
Thanks for the great advice, Michelle. Yeah, that's right...I will definitely try to capture episodes like this.
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1807132 tn?1318743597
Considering you felt palpitations and your bp appears to have been low even though you didn't pass out I would still make sure you capture any episodes like you just had if you get the 30 day monitor.  I wouldn't wait until you are passing out if you get  some tachycardia and low readings like you had.  Maybe they will be able to tell just from that.  85/53 is pretty low and you likely were probably below 80/50 during the times the monitor was failing.  Anyways I do hope that you can get this documented and figured out without needing to pass out first to get an answer.  I'll keep my fingers crossed for you.
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Avatar universal
Thanks for the info Michelle! Yeah, I think you were right about the low BP because an hr back, I was feeling palpitations again (moderate but not severe), so checked my HR rate on a HR app that I have on my iphone. It was 157 (standing) and then 132, 134, 137.
I tried to take my BP with the Withings BP cuff and it kept failing (again). It does look like that home BP monitors cannot record low BPs. After 15 min, while sitting I was able to get a couple of readings.. it was 85-93 / 53-58.
I think I will buy a heart rate wrist watch or something like that to keep a track of my HR. I wish there was a home BP monitor that wouldn't fail to record low BPs.
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1807132 tn?1318743597
I had an svt called avnrt.  It was caused by an extra fiber leading into the avnode that sometimes caused my heart to get caught in a super fast beat of 230bpm or more.  Those episodes felt really manic and it was difficult to breath.  I had them all my life but the episodes only started to become frequent in my late 30s early 40s.  I just had the issue ablated in September of last year.  I also have ectopic beats.  These are irritated spots in the heart that fire off an extra beat.  They don't really know why they occur.  Some say that everyone gets them and will go so far as to say they get them everyday.  I do believe everyone will get them but I don't believe it is everyday.  I can have bouts of them where they are in the thousands but mostly I get a few hundred a day.  Both those conditions are not related to my bp issue.  My bp issue is minor compared to yours.  My bp would dip really low when I had an svt episode so there is a possibility that you have some sort of fast beat that you just aren't feeling, not everyone feels it.  Or you could be having pauses of some sort as well.  But then again your bp issues may not be heart related at all but just affects the heart.  When our body feels distress it will usually cause the heart to speed up to compensate.  Anyways I suspect I have some sort of dysautonmia issue because my heart is all over the place but it is a minor case and one I can still function with.   I have also had hormonal issues my whole life as well.  But again, not anything that made it hard for me to function so I never pursued any of the issues.  I had hot flashes in my 20s and thought it was normal.  Had episodes of fast beat all my life and thought it was normal.  My resting heart rate has always been near 100 and will tip quite easily and go into the 120s 130s on exertion a lot of the time but I have lived with it all my life and it never bothered me so whatever my issue is it is not a threat to me.  Unfortunately for you passing out is dangerous especially if you are driving.  Luckily like I said, I only had that happen 2 times and I believe it was also because I was anemic at the time.  The only thing I do have to pay attention to is watching changing my position too fast because very often everything goes black and it makes me feel like I will pass out and I have to stop and wait for it to pass.  But it isn't as extreme as you so definitely keep investigating your issue.  It may be totally unrelated to mine.  
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Avatar universal
Thank you for the wonderful advice! Yes, I see what you mean:).
I have been thinking the same thing..what if it happens during swimming ( it's something I love and have to do for Fibro). I just want some peace of mind and really take care of this as it has been going on for too long and has come to a point where I just want to know what's causing all this and get it treated. Will see what the EP says next week but want to be ready with an answer by then if he says I should get the ILR.
Michelle, I was curious if you have any arrythmias or any other cardiacrelated issues other than the low BP because your symptoms seem to be similar to mine. Thanks!
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995271 tn?1463924259
There was a success story on here for an implantable loop recorder (ILR).  Someone was able to catch the event, which like you was syncope related, and they were offered an ablation procedure as a result.  The results of the ablation were positive.

My own humble opinion was against IRLs up to that point.

With a holter, you run the very remote possibility of the event occurring when you're changing leads or just not wearing the device for some reason.  I didn't wear mine in the shower, for instance.

I've seen people report discomfort with ILRs at first.  Others say it was fine.

I can only relay what I've heard and read.  I don't have first hand experience with one.  

Another piece of advice I always offer is to think the test through.  OK so you manage to catch an event on the recorder, now what?  Sometimes working the problem through from the other end can lead to other conclusions.

In this case the "now what" would probably be an ablation if they can narrow down what part of your heart is causing the issue.
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Avatar universal
Thanks Michelle, for the encouraging words. Haha..yes! I know what you mean..feeling dizzy, slight palps, ringing in ears on a daily basis is normal for me. I just try not to pay too much attention to my symptoms unless I feel severe palpitations or about to faint. Honestly, I sometimes don't even know if I am unconscious(Syncope) or it's just Pre-syncope. But now I am going to write everything down and check my BP/HR regularly...keeping a journal is a great idea! My HR now, sitting is 105-119 and standing is 120-132.
I did get an Echo done and it is ok except for trace mitral regurgitation, mild tricuspid regurgitation and hypermobile interartrial septum which I am told is normal. I have also made an appointment with a Neurologist for Dysautonomia.
Will definitely keep you guys posted!
Thanks Tom for all the info on the 30 day monitor. No, I didn't know that the cost is for the actual monitoring.Thanks! It sounds pretty cool. I will have the advantage of having the implantable during swimming/ shower etc but with the 30 day looks like I can just put it on to the electrodes easily if I feel symptomatic too! That's great to know :)
Aah! didn't think that the cost of the implanatable will be more...So, they charge you again when it has to come out? That's a real bummer :(
Helpful - 0
1423357 tn?1511085442
I wanted to add something. Of course wtih an implanted recorder, you can swim, shower, etc.  You cannot do this with an external recorder.  You must take it off to shower, however you can leave the eledtrodes on if you wish.  They are reusuable so long as they remain securly fixed against your skin.

You'll have to judge as to whether an implanted recorder is worth the advantage to having the "24/7, all the time, anywhere" option they offer.
Helpful - 0
1423357 tn?1511085442
As you may already know, the cost for the 30 day monitor lie not in the device itself, but in the monitoring charges.

Both devices are set up beforehand with criteria and set points based on you particular condition.  If you suffer from bradycardia, the recorder can be set to auto record if your pulse drops below a programmed set point.

The cool thing about these recorders is they're always recording your heart. New data is streaming on as old data is sliding off, so in other words, it's not a complete 30 day recording of your heart.  There may be only minutes of actual memory available to record your heart.  The advantage of this is when an event happens, the recorder can automatically jump back a preset time and catch you going into the event, not just when you're into it.  SO what it will do is jump back a preset time, say 1 minute and commit the event to a memory slot.  Again, the recorder will be set to record to the memory slot for a particular amount of time.  Once the time period expires, the memory slot is closed and locked.  The recorder usually has 3 memory slots.  They can be set to auto-trigger or the user can force a recording by pressing a button.  The preset criteria is followed in a manual recording.

To give you an short example:
I went into SVT one night, and the recorder auto-triggered, jumping back one minute and thus catching the initiation of the event.  It put this data into memory slot #1.  After three minutes, the recorder closed the memory slot and beeped indicating it was complete.  However, I was still in SVT.  After some time, I was successful in slowing it down by doing Valsalva.  I immediately pressed the button which forced a recording in slot #2.  the recorder jumped back 1 minute, and started to fill the slot with data which included my heart dropping out of SVT and returning to NSR.  Afterwards, I called the monitoring lab and downloaded the data.  The technician was glad to see that I had the wherewithall to press the button in order to catch me coming out of it.  this data proved invaluable in determining my particular condition and was absolutely key in getting me onto a path for a cure.

I would guess and say that you could do at least three 30 day monitor events and not equal the cost to implant a device in your chest wall.  Remember, it has to out too!
Helpful - 0
1807132 tn?1318743597
I have presyncope almost every day though I don't have the nausea or sweating and palpitations.  I only had those symptoms when I passed out.  But I also had a fiborid tumor on my uterous at the time as well which caused heavy menstral periods so that could have been a factor in my situation.  I know when my bp gets low especially if I am exercising I will feel the symptoms you describe so it really does sound like a low bp issue though if I down a lot of water it seems to really help me but it doesn't seem to work for you so keep at finding a reason. And just so you know home monitors seem to have difficulty reading low bp so you may pass the threshold of good low into obviously a danger zone where one can pass out.   Why it is low is another story.  Finding out why is key here.  And getting your heart evaluate is a very good place to start.  I might even push to have an echo done to make sure your heart is structurally fine.  If that comes back normal that will be a big relief.  Then you can reinvestigate if it is an autonomic issue or even possibly a lung issue.  In general the readings you have given are not alarming but something is obviously going on so just keep on top of it and you should find some resolution at some point.  These things can take a while but just hang in there and be persistent.  You really do have to be your own best advocate when you know something needs attention.   So stay strong and keep us posted on how you are doing.
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