Normal to not sleep?

I'm so new to this whole thing. I've had a pacemaker/defibulator put in about 5 days ago and can't sleep at all. All I know is it's currently set to 80bpm. This is all brand new for me and such a big change in life. Especially for my age(29). Thanks to whoever responds to this.

11 Comments

Sleeping

by golden_snitch - 2013-12-05 05:12:32

Hi Jason & welcome to the club!

The question is why you can't sleep: Is it because of everything that's just happened, are you lying awake thinking about the implant, the consequences etc.? Or is it because the incision and the ICD pocket still hurt and you don't know how to sleep comfortably? Or is it because your base heart rate is too fast?

To me 80bpm at night sounds a bit fast, I'd prefer 50-60bpm, and I'd actually say that most people have a heart rate much slower than 80bpm at night (some active and well trained folks have rates of 40-50). However, I don't know what's the reason behind setting the base rate this high. If I were you, I'd ask the doctors and also tell them about your sleep problems. Maybe they agree to lower it a bit. Most devices allow you to set the base rate a little lower at nighttime. You program a time when nighttime starts and the time when you usually wake up. Then you can, for instance, set the rate at 60bpm when you're sleeping, and 70bpm or 80bpm for daytime.

If you are in too much pain to sleep well, take painkillers. There really is no reason to try to be strong, painkillers are a good thing when you've just had a surgery. Also, try to keep your neck-shoulder-area warm. Because of the pain from the incision, we often take a relieving posture that leads to muscular tensions in that area.

When the implant and all that is keeping your mind busy, give reading or listening to an audio book a try. When I can't sleep because I'm thinking stuff over and over again, I prepare myself a cup of herbal tea that I drink before I go to bed, and then when I'm in bed, I listen to an audiobook, and try to concentrate on the story. Also, this something reading to me usually makes me sleepy after a while.

Hope this helps a bit. Get better soon!

Inga

So many factors

by Marie12 - 2013-12-05 07:12:11

There can be so many factors as to why you are not sleeping. I have an ICD/pacemaker but I don't need the pacemaker part. It's set for 40 bpm.

A friend of mine who has had a pacemaker for two years told me that he had to have his rate lowered because he couldn't sleep. Once they did that, he was fine.

I don't sleep because of all the other issues mentioned in the comments. Every doctor (I have 4) has told me it will take time.

Welcome

by KAG - 2013-12-05 10:12:46

Not unusual to have trouble sleeping at first. You've been through a trauma and it takes a while to heal. You may want to read Don's post: "Some tough love for newbies". You can do a search in the upper right corner of this page. Also there are lots of posts for newbies, or new, which might help.

I'd suggest that you get to know your new little buddy. Get a copy of the interrogation report when they check your PM. It contains loads of info, what mode and settings your device has. I agree with Inga that 80 seems high for your lower rate. Once you have the report you can ask questions on this site to help you understand your device. As you are younger and probably active you may find that you'll need to get your settings tweaked to support your activity level. It also helps if you update why you got your PM, are you on meds for anything? Is it to treat an electrical problem? Sinus node and or AV node problems?

Lots of learning opportunities ahead. You've found a great site to get support and answers to questions. So follow your Dr's instructions, no lifting and arm raising on the PM side. Then as you get better, get back to your normal activities ASAP.

Kathy

Thanks

by JasonHusband84 - 2013-12-05 11:12:35

Wow, the support here is so nice! A lot of what you guys are talking about is very new to me so I don't have answers for everything yet. I've yet to see my Dr since the surgery.

I started having what I thought was seizures and was taken by ambulance to the hospital (This started at my work). While I was in the ER my pulse would dip down to the high 20's and not go up a whole lot from there. I have been diagnosed with 1st degree heart failure, and brugata.

I'm not sure if I have just one device that is a combo PM and a defibrillator or 2 seperate devices. I know they used 3 leads on me and that's about the best of my knowledge thus far. All I know is after the surgery my pulse was a constant 80 the entire time. I still don't know anything about the different settings and so on. Thank you guys!!!

Can't sleep

by Theknotguy - 2013-12-05 11:12:40

Yeah, I had problems sleeping at first. Part of it was the trauma I had gone through, part of it was what they were doing to me. Sticking needles in my arms causes me to go on an adrenaline rush and I can't sleep until that wears off.

While it may not feel that way, you've been through a lot and the brain has trouble keeping up. So hang in there. Sooner or later you'll start sleeping OK.

If you don't, go in for a sleep study. Sleep apnea goes hand-in-hand with heart trouble and yours may have not been diagnosed.

You'll also notice some extra pains, thumps, new feelings, extra heart beats, and all that. That goes along with your body adjusting to the PM. People have said they get a thumping, others have said they get a pulse in their jaw - all temporary symptoms of the PM doing it's work.

I'm set at the 80 level too - will have to find out why. However since my BP had a nasty habit of dropping down into the 50's at the low end, they may be keeping the heart rate faster to keep the BP at a "normal" level. Still a good question to ask. Sometimes the trade off for the Cardiologist is between bad and worse for you. So the slightly higher heart rate offsets the low BP. That doesn't mean it's permanent. They can change it in the future if your body adjusts.

Hang in there. It gets better!

Theknotguy

CRT-D

by golden_snitch - 2013-12-05 12:12:38

Jason,
that sounds like you got a so called CRT-D implant. It's one device that combines a bi-ventricular pacemaker (cardiac resynchronization therapy) with an ICD. It's especially good for heart failure patients who are at risk of suffering lifethreatening ventricular arrhythmias. The device makes both ventricles beat insync - some people experience heart failure, because the left and right ventricle are beating out of sync -, it can do something about your bradycardia (low heart rate), and in case you go into ventricular fibrillation due to your Brugada Syndrome it can shock your heart out of this arrhythmia.

How was your Brugada diagnosed? Usually that requires an EP study (heart catheterization) and you can also do genetic testing. Did you suffer a sudden cardiac arrest while on a monitor, so that the ECG showed clear Brugada indicators?

Best wishes
Inga

PM makers

by Elleninminn - 2013-12-05 12:12:58

Don't hesitate to call the patient services number at the company that makes your device. You probably have a temporary card that lists it. I found the Medtronic rep I talked to very informative and willing to answer all my questions about settings and the capabilities of my PM. Sometimes, when a PM must be implanted on an emergency basis, the medical staff doesn't have time to give us all the information that would be good to know.

What was your ...

by donr - 2013-12-06 01:12:00

...resting rate BEFORE you got the PM? If it was in the 50's or so, there's a fair chance that your problem IS, INDEED the HR set at 80. That would be some 30 BPM above what you were used to.

I found a difference whan they started me out at 80 BPM & my pre PM HR was all of 72. We are all different in this reard.

Before trying all sorts of complicated things, start by having the lower your PM's base to as close as they can come to your old rate. That is simple & quick & there's a fair chance that will help. If NOT - go on to the next more complex idea.

Don

Increased hb and psychological

by Hot Heart - 2013-12-07 02:12:54


Hi and welcome. I've not been in here for about a year but just dropped in and saw your post. When I first got my pm 5 yrs ago I had trouble sleeping. Part of it was because I was scared and also thought my heart was racing. It will pass, just takes time. I got my rate set to 70bpm and that seems fine for me. Hope you feel better soon.

Medication maybe???

by JasonHusband84 - 2013-12-07 07:12:09

Hi all and thanks for all the feedback. All of this is still really new/scary to me. I went from thinking I was so healthy and all of a sudden being told I need to get a PM to live life. I am not sure exactly what my resting heart rate was. When I went into the hospital I just know it dipped into the 20's. It's range was anywhere from mid 50's to high 20's. I did go into cardiac arrest while in the hospital and hooked up to everything. I was also given a ultrasound of my heart and the woman doing it told me my actual heart looks great. It just doesn't beat like it should be.

I'm still very unfamiliar with everything but I have a patient manual and it says it's a "Implantable Cardioverter Defibrillator". I was given a temporary wallet card until I am mailed a permanent one and is as follows:

DDBC3D4 BWF201311H

5076-45 PJN3227874 (45cm)

6947M55 TDK124388V (55cm)

All have the implant date next to each one of 11/30/2013. Do I have 2 devices in me or 1 device that acts as a PM & ICD? Again, thank you guys so much for the help. It's so nice to hear from people who have gone through this. Before I forget is there anyone on this forum that takes Zoloft with Brugada? I have been on Zoloft for years and is the only medication that really works for me and my cardiologist had said absolutely no more zoloft. Thanks again everyone for the responses. I'm so happy I found this site.


One device

by golden_snitch - 2013-12-09 03:12:20

Jason,
I explained that already: it's ONE device that has pacemaker and ICD functions.

Inga

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