Long-term pacemaker - fatigue
- by pacemaker_partner
- 2023-02-20 12:34:22
- 210 views
- 8 comments
Hi all - wondering if anyone can relate!
My partner is 31, he was born with third-degree congenital (complete) heart block and on his second PM (first one wasn't implanted until he was twelve despite being diagnosed as a baby).
Despite having the pacemaker he still experiences lots of fatigue and struggles to live a normal active life. He describes it as feeling like his energy battery never fully fills up, so he's always trying to make up the deficit. It was a little less rough when he was younger but over the last few years it seems to have got a lot worse.
An example - we went for a walk earlier today (he got quite out of breath and sweaty despite it being fairly neutral terrain) and as soon as we got home he fell asleep. He will likely be sleeping for the next 12hrs or so, and it will take him a few days to feel like he can really do anything or get out of the house again.
I wanted to reach out on here to see if anyone else experiences similar levels of fatigue?
We're a bit confused because everything we're reading about living with CHB & a pacemaker makes it seem like he should be able to live a fairly active life.
He also has C-PTSD, so we're wondering if it's a complication of having the two together?
Any help or insight is appreciated!
by Lavender - 2023-02-20 13:49:35
I'm sorry to hear what not only your partner is going through but also your own personal experience with this and how it affects you. I'm sure he's depressed and traumatized.
The sweating and breathlessness upon exertion is a red flag. Please get a cardiologist workup on him.
by AgentX86 - 2023-02-20 16:58:14
It certainly doesn't seem to be PM related. I'd get to a doctor to have this tracked down. These aren't good signs.
by PacedNRunning - 2023-02-21 03:41:57
Sounds like he may need an echocardiogram if he hasn't had one recently. Pacing for heart block can lead to heart failure especially after years of pacing. Hopefully he gets yearly echo's, if not, he needs one. I get them yearly to check specifically for this. The best part is it's an easy solution by adding a 3rd lead to their device. Definitely needs to be seen sooner rather than later.
by pacemaker_partner - 2023-02-21 06:01:45
Thanks so much everyone for your comments, it gives us places to go.
Seems like we're now learning how terrible his pacing clinic has been , no check-ins for years at a time, no support, and no real clarity about when he was due a unit change (they've been saying "in about a year" for at least 2 years, it's scary!). We thought this was all normal, but I don't think it is.
We're looking at moving to a different hospital for his care from now on!
Thanks also to MinimeJer05 for the diet & lifestyle tips, there's definitely sleep issues so we'll be looking into those too.
by Tracey_E - 2023-02-21 08:55:37
Your post reminds me of a former member here, also paced since childhood for CCHB with a lot of fatigue and other random issues. It turns out she has autoimmune issues which is what caused her CCHB. Things like that are tricky to diagnose. It took her years and a lot of persistence to unravel the full story. I'm not saying that's what's going on with him, but sometimes it's easy to focus on the one thing we know is wrong and miss some other signs. I would start with his GP.
Is his heart rate going up when you take your walks or is it staying at 60bpm the whole time? When the pacer reaches the end of life, it cuts back all of the extra features and paces at a steady 60bpm. When we pace every beat, like with CCHB, this will make us very dizzy and tired. If his rate is not going up higher, and his pacing clinic isn't responsive, I would take him to the ER. It's not actually an emergency, if this is what is happening he's perfectly safe, but this might be your fastest way to get an answer if the pacer is EOS (end of service).
Difficult to Pin Down
by SeenBetterDays - 2023-02-21 11:36:30
I have a similar feeling, fatigue which doesn't go away with rest. I went to a cardiologist to ask if it was possible I had pacemaker induced cardiomyopathy as my ejection fraction had fallen significantly since being 100 per cent paced in the right ventricle. He couldn't give a definitive diagnosis but it would definitely be worth checking with an echo as PacedNRunning suggested. Unfortunately fatigue is a symptom of so many conditions, it can be tricky to attribute to one specific issue. I have been reading recently about adrenal fatigue which can develop in response to a prolonged period of emotional or physical stress. This can lead to a situation where the adrenal glands are not producing a high enough level of cortisol which can lead to extreme tiredness. I am only mentioning that as you referred to C-PTSD. Sorry it's only a short in the dark, I think ideally your partner should have a GP appointment and hopefully they will be able to run some tests which could rule out some of the obvious culprits such as thyroid issues or anaemia. Also, a thorough pm device check seems much needed. Hope you get some answers and he sees a positive improvement soon. I know how hard it is when every day is an energy battle.
by dwelch - 2023-03-06 23:18:47
Myself and others that have commented here have CCHB. I have had pacers for 35 years. i was very active before number one at 19. And really I should not have made it. I didnt tell the doc about my activities.
The pacer did not interfere I continued to be very active until that whole being grown up and having a job behind a desk thing, and other responsibilities.
If it is heart/pacer then just call them get it checked out. Doing the math maybe this one has hit EOS. Get one of those finger led pulse ox clips (not a apple watch, etc, either take your pulse for a full minute against a second hand or stopwatch, or pulseox finger clip). if the rate stays fixed at say 65 or some number even if getting up and moving around, try to climb some stairs, etc. If it stays fixed he is in EOS and call them and describe what is going on. They will probably want to interrogate it anyway, if you cant get an immediate appointment as in that week, then go to the E.R. and let them find a machine/doc.
It may be that getting the new device may take a few weeks to reserve an O.R. for the surgery and you just have to ride it out.
Now C-PTSD is another story and my guess is it could contribute to mental and physical challenges? Stress, anxiety, whatever can wear you out. I dont know but I assume if he has this diagnosis then he has professionals that he works with and no reason to hesitate to call them as well.
IMO and my personal experience, the pacemaker fixes complete heart block, if you have to have a heart problem, thats the one you want because the pacer makes you "normal". So if the pacer is working right and tuned right, then there should be zero issues there. And the issue is something else. Now, yes anxiety over the device like any other thing going on in your head, can lead to exhaustion. but the device itself, if not at end of service, if working properly. will not be the problem.
has his lifestyle changed, I would have hoped that during childhood the device would allow for normal play activities that dont involve contact with the device. but as you transition into adulthood it is possible that the change in activity and the body may need a tuning of the pacer. 31 is quite young but still we all change a little each decade. But again, quick call to the pacer doc, quick check up on their device. if you have a take home box, push the button now no reason not to, if there is a device problem that can detect, they will call you (hopefully).
My hope is that the device is at its end and has gone into the safety mode, which will definitely kick your ass with climbing or stairs. Been there done that.
You know you're wired when...
You always have something close to your heart.
I live an extremely normal life now and my device does NOT hinder me in any way.
Doesn't Sound Right
by MinimeJer05 - 2023-02-20 12:43:33
While I can't offer up too much advice on this subject (I do feel more tired and fatigue ever since getting my PM, but I am also on a slew of new medications that have such side effects, but they happen to be better than the other option (getting dizzy/vertigo/etc). I can say that this doesn't sound normal and that he/both of you should seek out some medical advice perhaps?
Things he can try to focus on is:
Eating right -- is the diet balanced, is he getting enough nutrient-dense food and electrolytes?
Sleeping -- Does he have any undiagnosed sleeping issues? I recently got a CPAP and it has changed my life -- I never knew what "full energy" was until I got one for my sleep apnea.
Drinking fluids -- I know this one seems silly, but so many people don't drink enough water in their daily routine. As we get older, I find that the normal basics (eating right, drinking enough water) tend to have a much bigger impact that we care to admit.
I am recently 31 and I can have 0 energy if I eat too much junk or dehydrate myself, on top of taking my medications.
Best of luck!