sleep loss

I got my pm in 2003, I have not been able to sleep over 6 hours since.My pm doctor told me he would lower the setting to 40bpm instead of 50 but he lied to me and never changed it.
I hate my pacemaker and after 8 years I still think they made a snap decision to put this thing in me. When I ask for the proof in the test they did, they say trust us you need it.BS

They say I have 2nd degree heartblock. I say OK show me how you know that. They can't or don't want to.

I fired the cardio guy that originally told me I needed this thing. It was installed under his care. I fired him after he lied to me when I developed pericarditis. His patients looked like hell sitting in the waiting room. Got a different guy and I picked him by looking at his patients sitting in the waiting room. They looked great as far as heart patients go.

I also have a pacer doctor who lied to me about lowering my pacemaker to 40bpm so I can get some dame sleep. I'll be calling him today. I am still in denial and I'm pissed that these doctors bullshit me.I don't trust them at all, I do trust my cardiologist though. So is this denial? I don't think so. I'm mad.

6 Comments

For Ronaldo

by SMITTY - 2011-08-31 02:08:48

Hello,

I found your description of the problems you ran into in having input on your PM checkup, settings changes and getting a copy of the report very interesting. Especially the part where you said "in the UK you can't simply hire and fire your medical people."

When Obamacare was being promoted as the answer to our healthcare problems the program in the UK was one of the government plans that was held up as an example of how good government healthcare programs are. Right now in the U.S. we have freedom of choice when it comes to our health care. I'm not sure that will continue if and when Obamacare is fully implemented. I guess we can wait and see.

Four or five years ago I timidly asked my Dr if I could get a copy of my records for some reason and I was quickly told "those records are your property. We keep them to use as needed in our health care for you, but they are yours." In 2006 when I first asked for a copy of my PM checkup reports there was considerable hesitation before it was decided they should give me have a copy. Since then the only resistance I get is from the techs not wanting to go to the trouble of making me a copy. I hope that doesn't change.

If I don't want any changes in my settings I can ask for that and then when I can get a copy of the report I can see if changes were made anywhere. All changes, or any type, will be marked with (>). I hope we don't lose the freedom of input we currently have with our healthcare.

Smitty

Sketchy docs

by ekt32 - 2011-08-31 11:08:31

Don't let your experience with your previous doctors cloud your thoughts about all heart doctors. No doubt, you've had a bad experience. Those are some sketchy docs you were working with so good for you for getting away from them. No doctor should withhold information about your condition from you. If you ask about it, you should get an answer and your questions should be answered. My docs always make sure they have the documentation to prove what condition I have and they show me and explain it to me. If your doctor cannot do that, run far and run fast!

Best of luck to you with your future physicians. I hope you get the answers and information you deserve.

Emma

PM Causing Problems

by SMITTY - 2011-08-31 12:08:05


Hi Rick,

Aw come on, simmer down. We got young people reading messages here that may not know those words you are using and we got old folks here that may be overwhelmed by such language. And I’m kidding you.

I can understand why you would be PO’d but let me ask a question. Why, or how is the PM set at a low of 50 BPM making it difficult for you to sleep. I’ve had a PM for 11 years. Currently my low setting is 80 and there are times under certain conditions it makes it difficult for me to go to sleep but once a sleep it is not a bother. So I have to ask, are you taking any medications? Some of these can do a number on our sleeping.

As for showing you how they know you have 2nd degree heart block, that should be easy to do, This ailment can be detected by a simple EKG and any competent cardiologist would be able to see it. Now, if you are like me and they showed me an EKG strip and said I had heart block all I would be able to do is say, "is that right."

What is your normal heart rate without the PM? Unless it is extremely low you could do what they did to mine several years ago. I was having problems from the thing and asked to have it turned off, but rather than do that, the low set point was changed from 70 to 30. My normal heart rate is 55-60 so the PM never kicked in at the 30. A couple of years later it had to be restarted because of another problem and I was glad to have it available without more surgery.

If I can make a suggestion, take a calm and cool approach when talking to the Dr. Ask why do you have a PM for 2nd degree heart block? According to what I see on the Internet a PM is not the treatment of first choice for either 1st or 2nd degree heart block. Third degree HB is another story. Also ask for a copy of the printout of the PM checkup report. On that it should show the percentage of time your PM is helping your heart and that may provide some answers. Just don’t expect to understand all that is on that report because I think they probably use some foreign code in the report. But the percentage of pacing is usually pretty straight forward. I will venture a guess that your % number is low, otherwise the battery would have given up before now.

Good luck to you,

Smitty

Sleep mode

by Heidiglassmeyer - 2011-08-31 12:08:17

Is your low setting of 50 in a sleep mode or all the time? The only difference I have with sleeping is that I have a really hard time getting up if I have to awake before my "wake up" time. Is the Hr of 50 preventing you from sleepin 6 hours or is something else? If you have a sleep mode and it's "on" what is the time period? I would think for most people 50 would be a reasonable sleep setting unless your need is different. Maybe you need a greater window?

I really hope your new cardio works for you and you van get your questions answered!

Just a thought

by sue uk - 2011-09-01 04:09:14

I think because we have PM's we often "blame" the PM for any other medical problems we encounter this isn't always the case, l think its natural to think that way but maybe there is another reason for your sleep problems?
Wishing you well, Sue x
l

Comment

by ElectricFrank - 2011-09-01 12:09:03

Most every one here knows I'm not one to go easy on docs, but you need to understand what you are talking about or you will just be written off as a crank.

How do you know they lied about setting your pacer down to 40? Just checking you pulse doesn't cut it. With electrical block (whatever degree) the pacemaker can't slow your heart. It can only speed it up when it is below the limit. So the doc could have it set to 40, but your own natural pacer is making it go 50. In fact as riled up as you are it is unlikely you would even get down that low.

Take it from me, the pacer has nothing to do with your sleep problems. Right after I got my pacer the default settings were 80-120. That meant that the lowest my HR could go is 80. That never affected my sleep.

frank

You know you're wired when...

You get your device tuned-up for hot dates.

Member Quotes

This is my second Christmas with my pacemaker and I am so happy to be with my family.