How to Get Sleep after PM

• by jds66
• 2012-04-12 03:04:20
• Complications
• 2258 views
• 9 comments

I am back, two weeks now after the 3/29 surgery and I am having the most difficulty in two areas- 1.getting ANY sleep at all 2. Mental adjustment.

First of all, the mental angle of this is just way beyond what I thought it would be. I think I am battling a healthy dose of buyers remorse, since I haven't seen what I would term benefits right away.

My diagnosis is Sick Sinus Syndrome, and I was plodding along for many years with it. After complaining and feeling sort of more run down as time went by, I had two Holter monitors in Feb of this year. They showed an average rate of 47 and 48.

During the night, on both of them, the rate went as low as 32. I had a pause as long as about 3.5 seconds, which they say is about right on the edge of where they start to worry.

When I had all the same type of testing in 2007, my heart rates were about the same, if not lower- and at that time, they did not recommend a pacemaker.

Because I told my EP and Cardio that I felt like I had light headness and never ever restful sleep, they both suggested that a pacemaker would benefit me.

Fast forward, I agree, decide to give this a shot, as I certainly wasnt running on all cylinders and really hoped this was the cause.

Now, post surgery, I am finding that I am actually feeling worse than before. My now faster heart rate is keeping me up at night- the pacer is set to 60bpm.

What is happening is that while my heart is beating along at 60, all of a sudden, a surge of something, adrenaline, etc kicks in, and throws it up to say close to 70.

This is happening esp at night and when the surge comes in, it kicks me awake, really before I get any sleep.

I have survived getting sleep with using small half does of the Ambien sleep pill- but even then, the most sleep I got in a row was about 6 hours.

My recovery from the actually surgery is beautiful, I am a very quick healer, so the pain of the incision, etc, is not at all the issue. I can also move my arm fully around, there is zero discomfort there too.

It is just "getting used" to having this much higher heart rate that my body, for whatever reason over the years, made go lower, possibly to compensate for something else.

Now that my pulse rate is higher, I am wondering if whatever made it go lower naturally in the first place was my bodies way of trying to compensate for some other condition, maybe even non heart related that is now being aggrivated.

I have a Medtronic Sure Scan - two leads. I went in for an adjustment on 4/9, and my EP did lower me from 70 to 60 and turned down rate response from 7 to 3, since I was complaining that even playing the guitar was sending my heart beating way too quickly.

He was not familiar with the Rate Hysteresis setting (sleep mode setting on this model)- and I wasnt either, until I did my online homework and found the Medtronic Revo SureScan technical manual on the Medtronic Website.

Basically, this manual is HOW to program the device. Me being an IT person in real life, I see the settings I want to try, and am pretty sure the will work, right on page 105, heck I have them printed out!

I have the Medtronic Revo Surescan MRI, RVDR01. The initial settings are at DDDR.

I am going to suggest that they use the AAI mode, which will just fire the Atrial pacing lead, then they can program the pacer to go into the "Sleep mode" when it detects inactivity.

Hopefully, my adrenaline bursts or whatever goes on will not trigger it out of that before I can get to sleep. I believe there is another setting within that area from reading the manual that will tell the unit to avoid tracking these events and not to go back into normal awake mode(God I hope I am reading the manual right!).

On Monday, 4/9- here are my stats- the atrial lead was pacing me at over 90% of the time, makes perfect sense since my resting heart rate previous to the PM was 47, of course it is going to pace me that high.

The ventrial lead was doing about 3%- as the EP told me at surgery time- it wouldnt be doing all that much, and there is he is correct, I assume it is there for a down the road type thing.

I have all ready played my card of getting into the doctors office twice before my first "real" appoinment.

I know I have to give things a chance to work out and not be so impatient- but boy, sleep or lack thereof, is kinda a big thing.

I do see some improvements, or I am just getting used to things.

My next appointment is on May 7th, which right now seems a long time away.

I really dont know what to expect at this point- this could be all a normal part of the process of my body just trying to re synch itself. If so, boy it sucks!

I even stopped posting here for the last week because of my mental status- I felt so scared and out of whack within myself that I would not have made much sense, or un-necessarily caused myself more stress by just rambling symptoms, some of which I know are stress induced.

At this point, I am mentally trying to "quit the stinking thinking" so to speak, but let me tell you it is hard.

Part of me is trying to be patient- but the other part of me is like, "buddy, you just made a mistake, you have to live with it for now until either this is adjusted to work, or you decide to have it "turned off"

I am hoping by May 7th to have enough data to go on that will say, "hey, it is getting better and lets try to tweak these settings".

Or, "I think this maybe was a choice that I made, and something else in my body is not liking what I have done- lets undo this"

It is quite the quandry, to me at least, but I am hoping that some experiences from real people might shed some light on what to expect- and the lesser known mental angle of all of this- that was something that totally hit me-

I know Rome wasnt built in a day- but feeling now like a prisoner inside an even seemingly less functioning body than I had two weeks ago, I wasnt bargaining for either.