Still have questions/concerns

Comment posted by Stefani on 2011-04-14 22:10.
Hello there, I wrote once before and get some really great info. Hoping to get some more. I got my pm Dec. 23rd., I am 44 and had a low heart rate. I always shrugged this off because I am a runner. I was diagnosed with bradycardia (always feeling tired) and when I got my pm the dr. said it may not alleviate my symptoms (mostly being tired). Well, 3 1/2 months later and I am still feeling tired, but what is even more frustrating is my running is so hard! I have been to the tech three times to get "tweaked" and the last time my low was turned back down to 60 (the last tech set it at 70 without dr. approval), not sure what the max is. My heart rate sky rockets so quickly (10th. mile) and at 1-2 miles I get a feeling of weakness in my arms and legs that passes if I slow down. I am not set to go back to the tech for 2 months but am really getting discouraged with my running, any suggestions would be appreciated. As an aside, I have not seen a dr. since my pm was put in, is this normal?? Thank you for any help, advice you can share :) I have really relied on everyones posts since I have had my pm put in, thank you for all of your help...




6 Comments

Possibilities

by ElectricFrank - 2011-04-15 01:04:03

There are a couple of possibilities

One is the Upper Trackiing Rate. This sets the maximum rate your heart can be paced by the pacemaker. If it is set too low your heart will start skipping beats to control the rate at a time when you need the higher rate for running. This not only limits blood to your muscles, but also doesn't feel good. Unless you have some other heart problem the upper rate should be set to allow you to get to your target rate plus a bit more for overshoot during cool down.

Another possibility is that Rate Response is ON and not properly adjusted. For physically active people the only way to set this accurately is to be exercising on a treadmill or bicycle to cofirm settings.

All of this is related to the factor default settings that are programmed into the pacer from the factory. They work reasonably well with the average pacemaker population, but are not suited to a runner like you.

Ask the tech for a copy of the pre and post programming report. Also, get a copy of your medical records that show your diagnosis and reason for the pacer. Bradycardia isn't a sufficient diagnosis. The source of the brady could be AV block or Sick Sinus Syndrome, and that determines the settings.

frank

frustrating

by Tracey_E - 2011-04-15 07:04:27

Frank said most of what I was thinking! Brady is a symptom, not a cause, so see if you can find an additional diagnosis. Different problems can cause brady but they have different fixes.

Some techs are just not as good as others. Some techs are good but just don't see many young active patients so they lack the experience to get you tweaked properly. Another tech may see something different if this one can't get it. I normally see my tech only, follow up with the dr once a year or if there's a problem so yeah, it's normal to not see the dr often.

First, I'd ask to discuss it with the dr rather than the tech and don't put up with feeling bad for two months! Second, something that's helped me several times over the years is getting on a treadmill while hooked up to the pm computer, let them see what is happening when I work out.

Good luck!

Been there, done that...

by COBradyBunch - 2011-04-15 12:04:36

History, I was an active 50 year old hiker, kayaker and cyclist when I suddenly found myself in the hospital after I had flat lined and passed out in my kitchen, and then flat lined in the hospital and woke up with a crash team next to my bed. No history of heart disease (except Rheumatic Fever 43 years before) but suddenly I had a pacemaker. Some things I have learned about being young, athletic and having a pacemaker.

First things first... TALK TO YOUR DOC not the pacer tech. Your doc will have a lot better idea what you need your settings to be and what the pacemaker is in your chest for. When I got mine I was told I was to get the standard settings, 70 - 120. I had the Rate Response on, I had some diag that ran (and woke me up every night at about 3:00 am) on and basically I was given the settings of a 65 year old sedentary person in my opinion. The pacer tech wouldn't even talk to me about the settings at first. First appointment I had with my doc after I was rrecovered enough to do it my doc put me through a treadmill where once I had started and had reached 120 they turned the pacer off and let my heart take over on its own. Turned out 120 was WAY TO LOW and actually since I am also brady, SSS, block there really was no reason for me to have an upper limit set. Also since my heart does respond normally to exercise there was no reason for Rate Response (at least not at this time). My issue was my HR would drop so low I would also drop, hit the floor and be out cold. My pacemaker is basically to prevent my heart from doing the flat lining it was occasionally doing. After testing and negotiations, remember at all times it is your body, something we seem to forget sometimes, I am set what I and my doc believe are the right settings for me, which is NO WHERE NEAR what the pacer tech set me at to begin with. Talk to your doc and take ownership of your own treatment. Both will make you feel much better, even before you get your pacer set to what is best for you.

To everyone who responded...

by Stefani - 2011-04-20 06:04:14

Thank you so much for all of the good info. I just copied all of the important information and am seeing the Dr. tomorrow. I am so appreciative of all of your help, makes me feel like I am not crazy and there is hope! I will keep you posted and thank you again :)!

Demand an Appointment With Your Doctor

by hjfarr - 2011-04-25 06:04:26

You should get an appointment with your doc with the tech present. Get them to monitor you on the treadmill. That will enable your doctor to tell the tech what adjustments to make. I'm lucky. My doc attends every session with the tech & has told me if I have any problems with the settings during exercise he will monitor me on the treadmill. Good luck.

Trojan

by trojans - 2011-10-28 08:10:16

Hi Stefani, Please read my posting of 10/28/11 entitled, "My Story". Good luck to you and God bless.

You know you're wired when...

Your ICD has a better memory than you.

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