exhaustion question

My pacemaker has been in place almost a month now. I'm sleeping probably 18 hours a day. Each day I tell myself, today I'm going to get moving, but an hour on my feet I crawl back into bed and sleep another 4 hours of absolutely exhausted sleep.
Today I slept until 2 pm. Took a relaxed slow paced walk for 40 minutes, came home, couldn't stay upright, and slept until 9:30 pm. I've been up an hour, worn out and am going to sleep again a few minutes. Last year at this time I could walk 5 miles at a brisk pace and put in a full day of hard work.

My reports of exhaustion to my doctor make absolutely no difference. Quality of life, maintaining employment has all gone away and my frustration that this doesn't seem to register as an issue with the doctors I'm seeing is growing.

Has anyone experienced this level of exhaustion and if so did you find out what it was?

14 Comments

OK Divergent1

by NiceNiecey - 2014-04-07 03:04:49

I was also very exhausted post PM. I am 55 and was falling asleep in every waiting room I sat in. As a result, I took a fairly lengthy nap every afternoon for the first 6 or 7 weeks. I was "implanted" on Christmas Eve and I am no longer exhausted.

Like you, I've had numerous tests, all of which have come back normal - including Lyme Disease.

If your exhaustion continues much longer, investigating a depression component may help. Any procedure performed on the heart can bring about depression.

Please hang in here and don't feel defensive about responses to your comments and questions. Donr seems to be an affable, helpful guy and describes himself as having a wacko, macabre sense of humor. You can click on a member's name and view their profile, often helpful for background information and personality cues.

All the best,
Nice Niecey

Still tired

by Missattitude - 2014-04-07 05:04:20

This is the same thing that happen to me....and I have had my pacemaker since 2011. All I here from my doctor is ur pacemaker is working fine, but why do I feel this way. Still no answer. Don't think there is anything they can do or they just don't want to say what the problem is..I'm to tired to fight with them anymore.

How did I deal with exhaustion?

by SaraTB - 2014-04-07 06:04:26

Put simply, I refused to take no for an answer: I hounded my EP until I got the PM programmed more appropriately. (In truth, he was very supportive and willing to work endlessly with me until I was happy, which took several months).

The key here, as you're specifically asking how other people handled it, is to take responsibility for sorting it out: you've said how unhappy you are with your cardiologist, that he doesn't seem to have experience with PMs and is dismissive, and that you don't have an EP in your town. But, you're still not getting results from the doctor. So: YOU have to take it the next step, and go and find an EP, even if it's a long way away. There are people on this forum who travel hours to see an EP: because it's worth it to them, to get the expertise and knowledge in programming.

I don't mean to be hard here, because I know how incredibly difficult this can be, especially when you feel too tired to even pick up the phone and call around for an EP, but it seems you're not getting support from your cardiologist, you've eliminated other potential causes: so now it's up to you to find another, more specialist doctor.

Another alternative is to insist your cardiologist arrange an appointment with the manufacturer's representative to review the settings. They are extremely knowledgable, but have to defer to the doctor. However, a team approach to solve the issue, with you pushing for it, may help. The doctor may not even realise what a service the manufacturer's provide (in which case, I still think you should find an EP).

We, as patients, have to advocate for ourselves.

exhaustion

by KathyB - 2014-04-07 06:04:26

This should not be happening since your heart is beating and sending sufficient blood to your organs and brain. How is your EF Is this different than how you felt before the pacemaker? Is it your first pacemaker? Not to be a smart alex but could you have some depression from getting a pacemaker? These are all questions that may need to be answered. Stay with us, there will be lots of answers and or suggestions for you. Great support group here

An Exhausting Comment for you!

by daynanestor1 - 2014-04-07 06:04:58

Been there and fixed it all on my own!

I am 42 yrs old all my tests were normal--lyme, thyroid and no additional heart problems and my doctors still don't know what caused my 3rd degree heart block which I recieved a PM on Oct 23rd 2013. I was very tired the first 2 months after the procedure and am currently struggling with Should/neck spasms due to the procedure--in PT now and working hard to get back to normal, but my energy levels have come back now.

I am on no perscription drugs and was offered some stimulant drugs along with anti depression/anti anxiety meds by a doctor--ran far away from him and became my own advocate trying different natural products.

I found out ORGANIC green tea really got me peppy again. I drink one cup in the morning and one in the afternoon and I am not tired anymore. Also I use 1/2 TSP of iodized salt in my water everyday (must be iodized salt not sea salt--READ LABELS). Drink lots of water--the body needs to stay really hydrated and the doctors don't tell you this.

Try Yoga and some Chakra meditation so your body/mind can heal and accept the PM. Give yourself some time.

good luck,
dayna

regarding exhaustion

by divergent1 - 2014-04-07 07:04:53

My heart rate dropped to 16 seconds between beats before they put the pacemaker, on March 7, 2014. exhaustion was growing before, but I also had chest pain and very severe headaches. The headaches are gone that is amazing to me. I was actually really happy to get a pacemaker assuming it was going to help the exhaustion.

I was gratified that my heart did its thing in front of a crash team that picked me up off the floor because I was going to be sent home with the report everything was normal. That sinus node stop got me the pacemaker within 2 hours. So I'm happy about it but I'm not happy that they put the pacemaker in without investigating underlying causes.

It cleared up the headaches, my feet aren't blue anymore but the exhaustion remains. My town doesn't have an EP that specializes in pacemakers my cardiologist is an old guy that I don't think is current on anything. I think the pacemaker isn't adjusted properly but I do have an interrogation coming up. One doctor suggested its a gall bladder issue. Thanks for asking
I understand the other writers giving up.

I'm about there too, I've been to the ER 5 times now, the first got the pacemaker, one got me nitro and an admission and no one can explain the ongoing chest pains and exhaustion (no cath has been done)

You've mentioned no symptoms other

by donr - 2014-04-07 08:04:51

than exhaustion & wanting to sleep.

Lemme throw out the first suggestion - Have you been checked for Hypothyroidism?

That seems to be the common thread of thought about women w/ your situation. Usually to the exclusion of heart electrical problems.

Donr

Pacemaker settings??

by kmom - 2014-04-07 09:04:06

I'm really new at this as well, In fact this afternoon I will be receiving my first PM. but have heard a lot about settings and wondered if maybe your settings need to be adjusted?? the PM may be working fine but sometimes it needs to be "tweeked" for the individual as it may not be set high enough for certain situations. is your PM rate responsive?? just an idea??

thyroid ruled out

by divergent1 - 2014-04-07 09:04:08

Perfectly normal thyroid values you don't know my situation actually. You don't know I'm female or what blood work has been done tests ordered or exactly what the symptoms are. I didn't come to this site for a doctor. I came to learn how other people deal with their issues. If you dealt with exhaustion i m curious about your experience and cure

I'm not here for medical care or some patronizing guesses about women in my situation. Perhaps you can inform me what my situation supposedly is
The minimizing of my symptoms and attempt to explain away something extremely distressful by a condition doctors ruled out long ago is insulting. In fact they just ran a test for Lyme disease which is now the most likely guess. I'm waiting on results and I probably won't be back here because I don't want members playing doctor I wanted to hear from people who dealt with same problem

WHOA

by Grateful Heart - 2014-04-07 10:04:45

No one is playing Doctor. We all got here with our pacemakers/ ICD's for different reasons.

There are many experienced and knowledgeable members here (and Donr is high on that list) who are giving their time freely trying to help others. It doesn't sound like your Doctor is much help so you came here. I understand your frustration but take it out where it belongs, not the members trying to help you.

If we have an idea of what brought you the pacemaker, we can try and help. It may well be that someone has the same or similar diagnosis and they can help you figure it out, or at least, some new information for you to have a conversation with your Doctor.

The only hint you indicated was a sinus node issue so yes, the pacemaker should help. With nothing else to go on, we are left to guesses hence, Don's thyroid suggestion. Of course you are free to not return here but maybe a do over would better serve you. Just something to think about.

Good luck to you,

Grateful Heart

Sorry 'bout that...

by donr - 2014-04-07 11:04:11

I am guilty of not going back & reading your comment about the thyroid doctor.

However, I am quite confident you are a woman, based on your sentence a long time back wherein you said ""He tried to convince them the hospital EKG was broken, the guy who revived me said I took HER bp and pulse manually and I saw what I saw. I could have kissed him."

Donr

An unexpected exhaustion answer

by divergent1 - 2014-04-11 03:04:16

First of all donr, thanks your apology I was pretty short with you I appreciate your response. Thank you for the posters that shared your stories. Its all useful to me.

This is the first day since last I posted I've felt well enough to get on the computer. Turns out I had a hospital acquired staph infection, which left me feeling like I was going to die. The dose of antibiotics I'm on is strong enough to wipe it out if its spread through my body.

I feel 100 percent better and had the most restful sleep I've had in years (after a few days on the antibiotics.)

There are no EP's in my town, I was told by the technician that it is a myth they can adjust settings (what?) He probably can't just because there is no EP here. Its part of the reason I do plan on moving. I fired the cardiologist I had, read my visit reports and they were absolute fiction.

He just wrote "no complaints patient reports all is fine" when I was calling coming and repeatedly complaining about sleeping 18 hours a day.. Hospital acquired infection ripping through your body will also make one tired.

So glad you are feeling better

by Grateful Heart - 2014-04-11 04:04:07

And that they caught the staph infection, scary stuff.

Good for you for advocating for yourself and choosing to find a new Doctor. BTDT

I am glad you decided to stay here.

Feel better,

Grateful Heart

Now THAT's a Revoltin'.....

by donr - 2014-04-12 09:04:27

.....development! Who'd a'thunk that it was an infection? None of us did, obviously.

Divergent - I accept your counter apology. 'nuff said for both of us - on with life.

How did the infection get found out?

There is a silver lining - at least infections can (Under some circumstances) be cured relatively easy & fast, whereas the other issues everyone talked about can be tough nuts to crack.

Wish you the best in recovering.

Donr

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