Sudden heart rate drop

I have had a pacemaker for about a year - but am frustrated with paying big dollars for adjustments that don't seem to help. So I go out skiing or biking up hills - my heart rate gets to 140 and I'm feeling fine; then it drops to maybe 80 and stays there and I am either straining big time to keep going or have to stop until it recovers then try at it again.
Seemed at first that the pacemaker was kicking in. I so want to believe that it doesn't have to be this way, but I don't want to go back to the technicians and pay mightily to hear them say "interesting!" I wish to know how to find someoone who would care to help me. ANY BODY HAD SIMILAR EXPERIENCE WITH A SUDDEN HEART RATE DROP LIKE THAT???I would love some advice, encouragement, information whatever. I would love to be able to ski, hike, bike the hills again - still be with my friends.

12 Comments

Thankyou thankyou

by alaskankiwi - 2011-04-30 06:04:22

This is great. I so appreciate you taking the time to share so much info. I will take the time to process it after the busy weekend - I am excited to catch on to some inside experience. To respond for now:
my last visit was with a Medtronic Rep. but I was very dissappointed with her lack of concern, professionalism or technical confidence. Which is why I feel I have to take more initiative and why your response is so meaningful for me. From the print out I see that she changed paced AV rate from 150 to 200 ms, my sensed AV from 120 to 180 ms and turned the sinus preference on. I don't really know what this means yet - but hopefully I am on road to find out! Do you know of any resource for learning/reading about all this? Their explanations were so vague and confusing.

Self advocate

by MXpacer - 2011-04-30 09:04:05

I have a new buddy too and am glad to have run across your story. You do have to self advocate sometimes. There is a reason they called it practicing medicine instead of the art of medicine.Hope you find a good REP and someone who makes you feel like they are taking responsibility for your concerns. It is amazing that you can be around medical people and still feel like you are talking with a teenage bimbo at the burger joint. My personal opinion is to spout it out but if you live in a small town and not have to many other location/doc choices, that my be bad advice (LOL). Good luck.

you're welcome!

by Tracey_E - 2011-04-30 09:04:28

I would talk to your dr about having someone else from Medtronic take a look. Not all reps are created equal!

I never pay much attention to exactly what my settings are so this is a weak area for me but it sounds like she is decreasing the amount of time before the pm kicks in, which should help to prevent the drops. No clue what a sinus preference is. Electric Frank and Snitch, two of our members here, are a lot better than me at settings, hopefully one of them will jump in here.

I've been fortunate to have a cardiologist and rep that are wonderful at explaining things to me so I've never gone searching for more. Check out the book here:
http://www.pacemakerclub.com/public/jpage/1/p/Affiliate/content.do
The author is a member here and I've heard her speak. she's awesome! She has written manuals for most of the major manufacturers.

similar problem

by Tracey_E - 2011-04-30 09:04:33

I had a similar problem and it was tricky to get it programmed properly. It took months and multiple visits, but now I can exercise without any problem. They put me on a treadmill while hooked up to the pm computer more than once helped them get a clear picture what was happening so they could start to find an answer. My St Judes rep is amazing. He'd never had a similar situation so he went through case studies to find something similar to see how they handled it. Sometimes you're not going to get the answers you need from simply checking the pm.

I had two things coming into play, that's why I can't really explain what they did but I'll try! One, my hr would suddenly plummet on its own and they worked around that with rate drop response. Frank could explain it better but it has to do with how quickly the hr drops. You need your hr to go down after exercise but you don't want a sudden drop DURING exercise, if I understand correctly this rate drop response controls how the pm can tell the difference, watching how quickly the hr comes down, kicking in and pacing if it drops too quickly.

Second thing I had going on was I have av block- so I'm fully paced ventricle but atria does its own thing. Sometimes my atrial rate gets up to 180-200 during exercise, higher than the pm can pace the ventricle, which of course doesn't feel good. The pm has a sensor to keep us safe in episodes of afib, if the atria takes off too fast, it kicks in and puts the heart in an artificial 2:1 block so if I was pacing at 160 (my upper limit), it would suddenly only pace me at 80. A good thing if you are in afib, not so good if you are out for a run! Since I have no history of afib, they turned this feature off. Also, I eventually went on beta blockers to prevent the racing so now it controls it if I drop on my own, the beta blockers keep me from getting much over 150 and if I do get over 160, the pm will not throw me into a block thinking I'm in afib.

Don't know if any of this is clear enough to be helpful! They don't get a long of young and otherwise healthy and active pm patients, so they don't always have the experience to draw on to know right away how to get us feeling good if our problem isn't simple and obvious. Sometimes the problem is complex and it may take a while to figure out the right combination of settings that works for us. I eventually became a St Judes case study, my local rep wasn't satisfied with how good I felt on his best settings so he faxed all my records to their engineers, the guys who developed my pm, and they came back a few days later with suggested settings. So, the answer may be simple and they're just not seeing it, or the answer may be more complex and take some digging.

I think you need a new technician. Can the dr be brought in to be more active or is there another technician? Is the tech someone from the office who only knows how to check and see if it's pacing, or is it someone from the mfr who knows the device inside and out? If it's not the latter, that's the first thing you need to do, ask the dr for a visit from the mfr's rep. The former is ok if all is good but they are completely clueless when something out of the ordinary comes up. Good luck to you.

One note, do not strain to keep going when this happens! You have to stop and wait to exercise until you feel better. It's very hard on your body if it needs a hr of 140 but is only getting 80. You'll only hurt yourself by pushing through.

More

by ElectricFrank - 2011-05-01 03:05:03

By the way I agree with TraceyE's explanation of the 2:1 block when hitting the upper limit. The Medtronic technical manual mentions the possibility of a "precipitous" drop in HR under these conditions. This can be a risky situation for someone like you who engages in strenuous activities. Right at the time when you need the HR to support your cardiovascular needs your HR takes a nose dive.

My suggestion is to use a HR monitor and keep your HR down to around 150 until you get this resolved. The reason I suggest 150 is that there tends to be an overshoot in HR when we stop an activity, and this gives you some wiggle room.

frank

Possible problem with rep

by ElectricFrank - 2011-05-01 03:05:19

I have yet to find a Medtronic rep that is anything but competent. However, early on I discovered the hierarchy culture of the medical field. The rep is ethically bound to support the instructions of the primary cardiologist no matter how wrong he/she is.

Shortly after having my first pacer implanted I sensed this and an brought it to their attention. Basically, I made it clear that if there was a disagreement I wanted it to be resolved with both of them and myself in the room. The result is that the rep and I are free to discuss what is happening and then get the cardiologist's OK to proceed.

I actually have a very high respect for the cardiologist as a surgeon and "plumber". The same for the rep as an electronic engineer who understands synchronization, control, and feedback.

just a thought,

frank

Response

by alaskankiwi - 2011-05-01 06:05:07

Wrote a long reply/explanation to you and lost it in the 'add comment' stage. Bother, bother. I will get it right next time, I hope. Gotta go now.

logged out

by Tracey_E - 2011-05-02 07:05:23

We all do that! If we take too long to reply we get logged out. If you go to the top and log in, then hit the back button, the post will still be there. Do the new spam filter and try again!

Too complicated for an engineer.

by ElectricFrank - 2011-05-02 11:05:27

Actually, I've used that, Tracy. Just had to put the engineer comment in. LOL

frank

Lost Comment

by ElectricFrank - 2011-05-02 12:05:13

I know that one. My solution for long comments is to copy it into memory periodically as I'm writing. That way if something happens I can paste it back into the comment box.

Thanks for letting me know.

frank

More info ...

by alaskankiwi - 2011-05-03 04:05:22

Thankyou so much for your responses. It gives me hope knowing there are such people out there who would care enough about my situation to take the time to share stories and give advise. Now to answer some questions and for a bit more of an explanation of my pacemaker and me.

I struggled with the idea of getting a pacemaker – wanting to believe for a miracle or that my body would heal itself, but there was so much life left to live and I was reluctant to give up doing things with family and friends.
My main issues were that my resting HR would drop to low 40’s and I would feel sort of ‘floaty’ and disconnected. When out skiing or biking my HR would get up to 160 and then suddenly drop to 80 – this took a while to work out because at first I thought I had a lung problem. About this time, my dear sister died of cardiac arrest.
So, I had it implanted last April. I believe it was functioning quite well at first. I could feel it kick in and I would be blessed with the energy to hike or bike up a hill. We even did a cycling/hiking trip into Denali National Park last fall.
But through the winter, it seemed to become less and less effective. Cross country skiing was tough, I would have to constantly stop on the rises.
I was anxious to see if it could be adjusted, I got an apt in Feb. But that experience was rather humiliating. I felt like I had to beg to be listened to and felt like I was being told I should be grateful to be able to get off the couch. I did get a treadmill test done – which gave rise to lots of the ‘oh this is interesting’ comments. They made a couple of adjustments they thought might help and said goodbye. They were all very nice, but I was very disappointed with the lack of concern or savviness and with having to pay $800
to show them something interesting!
I have started monitoring with a monitor on the exercise bike and can see some crazy patterns. Esp. noticeable is that now I can barely get into the 140’s without a rapid drop to 80 – which doesn’t feel too good. Now I think I am repeating myself. Oops - tiredness!

I would be excited to go back for another adjustment if I thought I would be seeing someone who might understand the situation and the potential for this little gadget to help me keep up with my 50 year old friends.

How should I approach this?

But now I’m weary and must to bed.

More info on your condition?

by COBradyBunch - 2011-05-12 11:05:28

Are you fully pacer dependent or does your heart usually follow it's natural pulse is my big question. If you are set like I am the ONLY time my pacer is doing anything is when my HR craters and it keeps me from going below 50. Yours may be doing the same thing but your bottom may be 80 (which is very high it seems to me, but who knows). You may be going into more episodes and you may need to have some things you currently have turned off turned on, like Rate Response or you just might need an adjustment. Talk to your pacer tech and your doc. They should be able to help you figure things out. Let us know how it goes.

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It may be the first time we've felt a normal heart rhythm in a long time, so of course it seems too fast and too strong.