Three Weeks In-Still Not Sure

• by jds66
• 2012-04-22 01:04:33
• Checkups & Settings
• 1613 views
• 4 comments

Hi all,

After three weeks, I have still been having plenty of moments of "did I do the right thing"

I got my Revo Sure Scan on 3/29. The settings were right out of the box, 60 bpm low, 120 high end. DDDR was the selected mode.

My diagnosis was Sick Sinus Syndrome, two holter monitors showed my rate was down to 32 at night and about 47 per day. I felt pretty un energetic, pressure in my head and brain foggy most of the time, even though I was still physically in good shape and pushed myself to exercise, as a 46 year old man.

The EP and Cardio said that my heart SSS was unusual in that the beat would originate in the AV node, then travel up to the SA mode, sort of backwards. How long it was doing that, I have no idea, but I did notice my heart rate was going lower and lower over the years, even I was doing less and less exercise.

In 2007, I had many of the same tests I had in 2012. My heart rate while awake a couple of times was in the upper 30's, and at that time, the Cardio I had then said I might need a pacer someday, but I was too young for one at 41 years old.

I had most of the same symptoms I have now, pressure in head, not energetic, brain fog, but pushed though it for the next five years, some years feeling better than others, but feeling I think progressively worse the past couple of years.

So, we fast fwd to 2012. I decide to go ahead with the procedure, my pressure in my head(which the cardio and EP thought was related to blood flow- my energy level and my lack of any restful sleep) led to me going along with this decision- along with making sure I didnt have lyme disease and that my hypothryoid was properly medicated, it has been.

I got the PM on 3/29- and immediately could not sleep at all. The settings for the Revo Sure Scan were out of the box, 60 low end 120 high end. DDDR was the setting.

I didnt feel right out of the box, my pressure in my head was not relieved at all(this is where I am kicking myself for not doing a head MRI before this- but the cardio and EP were pretty convincing that the pacer was the answer).

I went back to the Cardio on 4/3 as I just wasnt feeling well. My body has been used to beating at 47 and at 60, I just was getting no sleep or rest, but it wasnt a good feeling.

They noticed what they throught were missed beats, and turned me UP to 70 that day. The Cardio also prescribed Digoxin. I cant say I felt any better, if anything, I felt more wired now at 70 and sleep was only gotten by taking ambien, only for 3 hours at a time.

Life felt like one long day, where day and night really were just slipping by, I was not at all feeling like I had done myself a service, just the opposite.

After a week of heck at 70, I went back to the EP on 4/9, he said that I wasnt getting missed beats, just junctional rhythm, which two holter monitors didnt pick up, and that I did not need the digoxin. (that sort of gives me a little bit of a lack of confidence in my Cardiologist- he gave me a med I didnt need and just seemed too busy that day to really dig in).

The next two weeks brought zero relief either, I just could not sleep normally without medication-and I was having the roughest time with my heart over reacting to simple exercise.

Before this procedure, I was the kind of guy that could go all day, on adrenaline probably most of the time, but my heart seemingly could keep up.

Now, I feel like I have been diminished by this procedure.

I am an IT person, so I downloaded the Medtroic Revo SureScan manual, basically what the Medtronic rep would use to educate himself , and became versed in the different settings.

(thanks for the inspiration ElectricFrank- I went into my 4/20 appt with plenty of suggestions that I know most patients have no knowledge of).

I was able with lots of determination, to get back into the EP office on 4/20, with the Medtronic Rep there too, thankfully.

I suggested AAI mode initially, to use the Sleep Setting(AAI mode is the only mode with the Revo Sure Scan that has a Rate Hysteris mode, aka- Sleep Mode).

The rep was not sure that it would work the way that we thought, and called Medtronic to confirm, the sleep mode would basically go back to the lower programmed mode everytime it sensed I was doing something, like even rolling over in bed. That would be worse than just a steady mode, since my heart would be at the sleep mode, then jolted awake if I did something. Not sure if that is 100 % accurate, but the Medtronic rep did call the office to confirm that would not be the mode that would work for me the best.

I then suggested AAIR mode, which he was all ready looking at putting me on. AAIR=DDDR mode, which would result in more atrial pacing.

They were trying to address my sleep concerns, and turned down my low rate to now 40bpm.

To address my exercise concerns, the set my rate response rate to Low and also turned up my upper rate to 150-at my suggestion also.

I have found that sleep is still an issue the past couple of nights, but am surmising that since my heart was just put so much out of it's former known rhythm and I was reacting so poorly to it, it might take awhile before I readjust to this.

I still took the ambien last night- and think I actually got a better rest last night than I have in the past few weeks, though still sad that I had to rely on ambien, as before 3/29, I generally could sleep, maybe not well, but sleep without drugs.

The junctional rhythm is still there- something that the EP said that they didnt notice on the two holter monitors, that kinda stinks- I mean, pre PM, I didnt have a junctional rhythm issue- now I do.

The EP flat out says he does not know why that is happening, and that is isnt dangerous at all- and my heart does come back down after it goes up during a junctional rhythm. An example, I might be sitting typing, at 52 bpm, it all of a sudden goes up to 72 bpm, then comes down shortly there after, just something that seems weird.

Exercise wise, I feel like I am totally diminished from where I was. I used to be able to get alot done, albeit pushing myself to the wall, but now even with Rate Response set to Low, I find that my heart is actually beating where I can feel it, just simply going up steps, it might raise to 80 or so, just a few steps. I am so not used to that- and am wondering if that is just what a "normal" heart does, and I have to get used to that.

With all that detail, here are the questions I have:

Question 1.

Should I feel physically dimished after this, where I can physically do less than I did before? I know there is recovery time, and I have had a few tweaks now, but right now, I am not seeing a benefit.

Question2.

With my new low rate at 40 bpm, does this mean that my natural heart pacemaker is back to running the show, in other words, back to my heart running where the AV node is firing first, then triggering the SA node? If so, they what have I really accomplished by getting this PM, other than guaranting that I wont beat lower that 40bpm at sleep or have a pause longer than 3.4 seconds(and I had never passed out before, so that apparently wasnt hurting me yet).

Question 3.

At what point in this thearpy and adjustments to the device do we say, "hey, this is finally tuned properly to my body and working", or hey, "that 50-50 chance you guys said would help these symptoms- well, I am on the wrong side of the 50% and we need to decide this was not the right thearpy and remove the device."

I know I am only in this for a few weeks, and my experience has not been optimal to say the least. I have armed myself with the knowledge of the settings, and when I go back on 5/7 am going to ask to have the voltage turned down from 3V, to see if that will help, and see if Rate Response, or whatever else is making my heart now take off like a rocket when I do anything physical off.

I guess I am really confused if now the rate being so low, if I really am back to where I was prior 3/29 and the pacer is really not doing much unless I go under 40 bpm.

Thanks for reading such a long post, but wanted to give as much of the technical details to anyone who wants to comment, as the more info, the better the reply that can be given.

Jeff