Great 1st week, crappy ever since

I've scrolled thru a ton of posts, hoping to find one that covers my situation, but couldn't find one. So here goes:

I had a heart attack in 2004- after a 5K- in which I placed 2nd btw. Waited three days and two more episodes before going to the doctor, b/c that's how deep my denial was. Had total occlusion of RCA. Nothing could be done since I had waited, except to go on meds and learn to live with damaged heart muscle. (I was 44 and in awesome shape).
Fast forward to 2007 when I "died". EP thought v-tach but all tests came back ok. On instinct, he implanted a heart monitor.
Now go to Feb 2012. After 4 years of monitoring, it's discovered I have total heart block and need a pm.
I have Medtronic Revo MRI SureScan. Woke up from surgery and felt like I was 20 again- wide awake, lots of energy, etc. it was AWESOME!
Go for my post-op check up two weeks later. EP not there, not the Medtronic rep. Just a nurse and a nursing student. They test the pm and I go home. Luckily my husband was with me b/c I was totally worn out from the testing, and slept the entire 2-hr drive home! Since then I am back to feeling fatigued/low energy/etc.
I am on my fourth EP (two moved, two I didn't like), and none have gotten me back to how I felt prior to my first checkup.
I keep asking if the settings were changed at that visit and I get no response, other than "we will change this, it will make you feel better".
After two years of dealing with this, I am ready to pack up and go to Mayo for a complete work up. But I don't have the strength to get my suitcase out of the attic.
Any insight you can provide is greatly appreciated. Sorry this is so long, but member posts on other questions cited the writer for not providing enough info.
Oh, and my meds did not change after I got my pm. Last year Ramipril and Zetia were added. The others are Atenolol, Lipitor, baby aspirin, Synthroid (thyroid med), Vit D, and multi-vitamin.
Thanks!

6 Comments

Do the Mayo route

by Theknotguy - 2014-02-24 07:02:20

This is one of the times I wish I knew more about drug interactions, heart disease, and medicine but I don't.

I have sleep apnea. Was down to 1 1/2 hours of sleep at a time which means you are non-functioning. Can't tell you how tired I was. Because I was so tired, I refused some help because I just didn't have the energy to change my life style. However, once I got help, my life (and sleeping) turned around. Getting help felt like trying to climb Mount Everest. But it was well worth the effort.

So, even though you may not feel like it, go the Mayo route and get some help. Obviously something is wrong but if you do nothing, nothing will change.

I went through a period after getting my PM where I felt - great! Then went through a period where I didn't feel so good. Now am going through another period where I feel good. I'm hoping this yo-yo period is just part of the overall healing process. But the time frame I mention is within the space of five months not two years.

You can also call your health insurance company and see if they have a nursing help line. They usually don't cost anything and you're talking to a licensed medical professional. Perhaps they can offer some insight into your condition.

You can also talk to your drug supplier. Talking with a knowledgeable pharmacist may give you some insight into your condition too.

Hope you can get some help.

Theknotguy

Ck

by Casper - 2014-02-24 10:02:24

Hi Ck,

Sorry to hear you've been having difficulties, I strongly urge you to get a detailed list of all your settings each time you go for you visits.

This way you can always keep track of all the adjustments.

Should you have any questions, there are a lot of people who can help here.

Good luck,

Casper

Casper, the friendly ghost

by Ck - 2014-02-25 08:02:17

I had an MRI yesterday and the Medtronic tech gave me a printout of the changes he made. That is the first time I've ever gotten that!

Ironically, just before I left for the MRI the EP office called to say I have/don't have Winky Bock and that the setting for this needed to be turned on/off. The office lady spoke so fast I only caught every third word.
Anyhow, I told the tech at the MRI place and he changed the setting. I'm still not sure if it was on or off. And the printout is mostly abbreviations, so I don't understand them.

I know I have PVCs and PACs, but had no idea about the Winky Bock. I mean seriously, how many different arrythmias can one person have?!!

The Knot

by Ck - 2014-02-25 08:02:22

Hey Knot, do you know why you started feeling bad?

I'd do Mayo in a heartbeat (pun intended) if it wasn't clear across the country. I know there are other great hospitals, but I went to Mayo and got to meet some of the doctors (was there for a conference), so I would be comfortable going there.

Because of your comment about sleep apnea I made an appt for a sleep study. While I really don't want to wear that mask thing, if I do have that condition I'm guessing the mask is better than feeling like crud.

I am tired all the time too

by statuesque - 2014-02-27 01:02:33

Good luck I am either sleeping most of the day or drinking coffee to stay awake.......PM implanted on Dec 13th 2013.

What have you tried?

by Ck - 2014-02-27 07:02:12

I am wondering if others who posted about fatigue are still dealing with it, or if they found a reason. And if there was a reason, what they did to combat it.
I had read your posts the other day. Did you find out about the junction rhythm?
I see my EP on Friday and will ask about that and pacemaker syndrome. Of course, he thinks I am crazy. But he's my 5th EP, and I'm tired of switching, so most likely will stick with him.
The EPs I had that were really good moved away. Got better offers with better pay. That's the problem I'm having with living in a small town.

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Member Quotes

It is just over 10 years since a dual lead device was implanted for complete heart block. It has worked perfectly and I have traveled well near two million miles internationally since then.