Hello

I was hoping that someone has some advice for me. I had my pacemaker inserted just over 1 year ago, and I still do not feel much better than before the insertion. The pacemaker Clinic is telling me that my right ventricular lead is performing at the lower limits of normal. Not sure what this means as they didn't give me much of an explanation. I still am very fatigued and have shortness of breath on occasion. My pacemaker was inserted for sick sinus syndrome. My pulse is regulated now but I still don't feel like I should. Is there any one that is experiencing the same symptoms that I am?

4 Comments

SSS

by golden_snitch - 2014-05-25 03:05:16

Hey there!

I would not give the right ventricular lead much thought (unless it drains battery), because with SSS you should not need it at all. What you need is atrial pacing when your sinus node is too slow. If you really only have SSS, and no AV-nodal blocks, then you could even switch the ventricular lead off.

With SSS it could very well be that you need the pacemaker's rate response feature. It's supposed to adjust your heart rate to your level of activity. Fatigue and shortness of breath could be a sign that the rate response is either not activated, though you need it, or that it has not been optimized according to your particular needs. Rate response settings can be tricky, and it often takes several tweaks to get them right. In some patients the rate response is too sensitive in the beginning, making the heart race with every little activity; in others it's not responding quick enough, making them short of breath, with weak legs etc.

Now, if I were you I'd get this checked out. The pacemaker collects data, as for instance a heart rate profile, but you could also do a treadmill test or wear a holter to see, if your heart rate increases properly when you move around. You can also get an event monitor that you can keep for about 30 days, and that you can activate when you have symptoms. It's perfect when you do not have symptoms everyday. That would help to see whether you are having some kind of rhythm or pacer issues when you are symptomatic.

Best wishes

Inga

Comment

by RamonaFriesen - 2014-05-25 05:05:16

Inga,
Thanks for your comment. I do have the weak rubbery feeling legs. I though it might just be menopause. I work full time and have been exhausted on more occasions than not. I have been going to bed between 8:30 -9:00pm
and sleeping till 6:30am. Sometimes I wake up feeling exhausted. My next appointment with the pacemaker clinic is July 29, 14. I am not sure if this is a more urgent
issue and maybe I should be seeing them sooner? I never know because I am new at this. What are your thoughts?
I don't want to be to paranoid:-)

Regards,
Ramona

Sooner

by HoneyBadger - 2014-05-25 09:05:27

Since you are not feeling better, please go back to the clinic. Inga is right, you need to figure out if it's a heart rhythm or pacemaker setting issue or a combination of the two. I have SSS and had a pacemaker implanted last July for heart block. I too am not feeling well and I need to figure the same issues out as you. I plan on continuing to see cardiologists and pacemaker reps until I feel better. You are not being paranoid, you are advocating for yourself. No one else can do that. I believe we can both feel better as we learn more about our conditions and professionals make adjustments. Please keep us posted on your progress and best wishes. Hope you feel much better soon.

Keep going back

by Gotrhythm - 2014-06-06 08:06:51

If you don't feel better than you did pre-PM, something is going on.

In my case, rather than helping, the ventricle lead was causing part of my problem. But that might not be true for you.

PM and PM settings have to be tailored to you.The usual or standard settings don't work for everyone.Sometimes it takes several tries to find the optimal settings for YOU.

Go back to the clinic. Tell them your symptoms---all of them, whether you think it has anything to do with your heart or not.

Ask lots of questions about how the PM works. Cardios and PM clinics are afraid of overloading patients with too much information. Unless you ask, they will tell you very little.

Hope you feel better soon. Come back and tell us how the clinic visit goes.

You know you're wired when...

Your license plate reads “Pacer4Life”.

Member Quotes

It made a HUGE difference in my life. Once I got it, I was finally able to run, and ride my bike long distances.