Pacemaker insomnia

Hello,

I got a crt pacemaker 2 years ago and have been dealing with lack of sleep, so much so, that I thought I had fatal insomnia.  Was told by technician they never heard of anything like that.  I know what your thinking....anxiety.  No....I have had a pacemaker since 1999 at 25 years of age.  Mechanical heart valve surgery left me with heart block.  A dddr was placed with 2 leads. I slept fine.  Battery wore out, got a new pacemaker, slept fine.  2 years ago they said my heart was weakening and I needed a third wire.  Got a CRT pacemaker and 3rd wire.  Noticed my whole torso was pacing(thimping), Also noticed I could not sleep.  2 weeks later they adjusted to pm and the thumping in the torso stopped.  Went home, and no sleep was still a problem.  At it's worse I was going 7 days without sleep.  There's alot more to this, but I don't want to make it very long.  I am now given some benzos that help me sleep, but not enough for everyday use.  I have gone to sleep study.  I guess they were looking for sleep apnea, but nothing could be noted because I did not and do not sleep.  If anyone had this and fixed it please let me know.  I am sure it's the pm, I don't feel the same with this new one, heart beats harded, people can hear my heart now.  I go to the VA and it is rather dismissed, and I am exhausted..

4 Comments

VA

by arent80 - 2021-12-23 23:33:01

Hi there! Sorry to hear about all your troubles. I too go to the VA and felt dismissed. I just kept showing up weekly on Thursday's as a walk-in on their clinic days. I have it mostly dialed in but don't let them dismiss you. Keep showing up weekly If you have too. Have them show you how much the PM is working before and now. See if there is any correlation. Wish you luck! I know this is very hard at times. 

Insomnia ? cause

by Selwyn - 2021-12-24 12:48:00

Lack of sleep affects body and soul.  You are certainly suffering. What to do?

May I suggest you keep a sleep diary ( see https://www.nhs.uk/Livewell/insomnia/Documents/sleepdiary.pdf ). This is handy so that an objective analysis can be made by someone interested in the problem. 

The use of benzodiazepines as a help for insomnia will lead to more problems if you use these for more than 14 nights. There is the potential for dose increase, rebound insomnia, and the destruction of sleep patterns.

Sleep hygiene is important ( see https://www.southtees.nhs.uk/content/uploads/Sleep-Hygiene-sheet.pdf). These rules should be followed. 

At least this will point you in the right direction. 

 By now, you should have checked with the PM people that your resting heart rate is adjusted properly and you are not having arrhythmias. You may want to have a few basic tests done eg. thyroid function, medication ( if any) review etc.

Hope this helps. There are specialists that only deal with sleep disorders.

Kind regards,

Selwyn

Thanks for the replies

by jhigg - 2022-01-05 01:24:21

 arentas80 - I'm going to do what you suggest about asking them how the PM worked then and now.  I want to know settings wise if they changed it.  First and second PM I never really felt, only on test days.  This 3rd one kind of took away my life.  I wish I could do what you did and walk in, but the VA hospital is 90 miles from me.

 Selwyn - I've done all the sleep help things as they did not see a connection with the PM, suggesting sleep apnea.  I saw a CBT, a sociologist, who both in the end sent me to see a prescription pychologist.  He first tried alot of anti depressants.  My sleep journal was pretty empty as it's hard to fill out when you can't put a time that you fall asleep and a time that you wake up because those days are very rare.

I would like to also know if anyone ever felt there body thumping with a ddr 2 wire pacemaker.  I know mine did with the new CRT pacemaker and third wire, all the way down to my stomach, was hard to speak and breath.  They fixed that with settings, but I think the top part of me may still be doing that.  I didn't feel any of that with the DDR, just curious if it's possible at high settings for a 2 wire to do that.  I have an appt in March and will ask them to shut off 3rd wire, I'll update just incase this happens to anyone else.

Pacemaker insomnia

by Echosmom - 2022-01-20 20:19:22

I feel your frustration. I am on second pacemaker. Have been having terrible insomnia.

With 1st PM I had insomnia. Tech put it on sleep mode. The rate of heart during sleep. Think it was 55 bpm. Dr put me on 50mgs Trazadone for sleep. Have PM check next month. Going to ask about sleep mode again.

Hope this helps.

You know you're wired when...

You need to be re-booted each morning.

Member Quotes

Try to concentrate on how you’re able to be active again and feel normal, rather than on having a machine stuck in your body.