Sick sinus syndrome - any advice appreciated

I Also Have Sick Sinus Syndrome

by Shaun - 2017-03-11 09:48:21

Hi BIGGLES22,

I can't really offer advice, all I can do is share my experiences. I also have Sick Sinus Syndrome (SSS) Bradycardia, and 2 years ago at the age of 53 I received a dual lead pacemaker which kicks in when my heart rate drops below 60. I never had any symptoms until about 24 hours before I received the pacemaker (my SSS kicked in very quickly) and so I don't know what it was like living with SSS before the pacemaker.

Since receiving the pacemaker, very small levels of exertion (such as standing up or walking away from my desk) can cause dizziness and shortness of breath. However, I had an exercise stress test and it showed an excellent response both in terms of blood pressure and heart rate. But I already knew my heart responded well to endurance exercise because I cycle and train a lot, it's the small responses required for very small levels of exertion while I'm completely relaxed that can be problematic. Like you, I can also go through periods when I feel very tired and generally unwell (although I can't exactly put my finger on why I'm feeling unwell), however I believe my symptoms are related more to low blood pressure than the pacemaker. But in the year that followed my pacemaker implant I did keep going back to the doctors and I received a whole battery of testing to eliminate any serious causes for my symptoms. So if there's one piece of advice I can offer, it's that you should keep returning to your doctor and insist on being heard if you are concerned about any symptoms (note: the regular checkups are for when everything is going well and you don't have symptoms). Most likely there will be nothing wrong and your mind will be put at ease, but looking after your "state of mind" is in itself something which is very important to your recovery process.

After 2 years I still have occasional unexplained symptoms, but these have become the new "norm" and they no-longer bother me (much).

Good luck BIGGLES22.

PS

by Shaun - 2017-03-11 12:38:05

My experience of going to regular pacemaker checkups with lists of questions about symptoms is that you come away feeling a bit cheated because they interrogate the pacemaker then tell you everything looks fine, the pacemaker is doing its job and to contact your doctor about the symptoms.

Ditto

by TooYoung41 - 2017-03-12 04:22:22

They care more about that machine working properly than you working properly.

I've got nothing but problems after my implant, but every visit they go through a whole interrogation of the device then tell you there's notthing wrong and send you on your way.

My Two Cents

by TomL56 - 2017-03-12 10:53:49

I'm a little over two months in with my PM and I still don't feel normal. I'm beginning to think I may never feel normal again but I really try not to worry about it. 

Without the PM I'd be dead, so living with the changes in my life shouldn't be such a big deal. The doctors say I'll get used to it and I guess I will eventually. What choice do I have? 

I haven't slept through the night once since getting the PM. I wake up after about 3 to 4 hours of sleep. I've learned to just lay there until I fall back asleep which takes from 20 minutes to a few hours. Never had any trouble sleeping before the PM.

I feel light headed sometimes and a bit out of breath but nothing that feels serious. I think it is mostly just worrying about having more problems. Kind of like having a car for years with no problems then breaking down with it. You never quite feel fully confident in it agian. 

My GP says I just need a good kick in the ass. Like getting ready to ride a sled down a big hill and getting nervous about it just before you push off. It can be a few seconds of hesitation or you never do it. So I just try not to worry about it, which isn't easy but, as they say, I'll get used to it....