Not sleeping

Welcome!

by Penguin - 2023-10-31 15:35:26

Hi McLind

Sounds like quite a shock! Sorry you had to get a PM under those circumstances - although clearly it’s good that your total heart block was spotted and treated so quickly. 

Re: Sleep - Could you explain what is keeping you awake  - Discomfort? Sleeping position due to wound? Anxiety? New symptoms / feelings in your chest? 

Any of the above (or a combination) cause problems for people initially and each deserves a different response.  If you could let us know we may be able to provide a more concise answer. 

I empathise btw - lack of sleep is awful! 

Best Wishes 

Not sleeping

by McLind - 2023-10-31 16:01:14

Thanks for the fast responce. At first I would say it was anxiety. But now I just can not turn my head off. I want to go to sleep but it takes an age to drop off. There is no discomfort. I have slept sitting up down stairs after trying to sleep for 4 hours or so in bed. in that 4 hours my smart watch says i have had a total of about an hours broken sleep. I have been for a few little walks in the day time and my eating is slowly coming back. I have felt the odd jump in my stomach which I thought was anxiety in the early days. It also may be hunger.  I have lost over a stone and half since.

Take it Gently

by Penguin - 2023-10-31 17:04:27

Hi McLind, 

Well it doesn’t sound pacing related unless you’re being disturbed by a faster heart rate?

New medications may be a potential cause. Lots of people report disturbed sleep on certain meds and higher doses. Loss of appetite and weight loss are reported by some people.  What are you taking? 

The weight loss and hunger are other obvious causes. A poor appetite needs to be tempted to appear again. When it’s happened to me I try ‘little and often’ and eat fruit which is palate cleansing if meds are making you feel queasy; banana before bed and small meals that are fresh and easy to make / eat like poached egg on toast, cereal with milk, an avocado, soup or pieces of ham, chicken.  Try the carbs a few hours before bed and think about milk drinks or meal replacement drinks if you can’t eat easily. 

Exercise may help if you’re not feeling too weak from the weightloss. Try to get outside and walk a little further everyday. A walking companion helps with motivation and confidence. 

As for switching off - not always easy. Do you have a lot on your mind? Talking through worries helps and so does tuning out from them at least 3 hours before bed and finding another distraction like a boring TV programme, reading or a warm bath.   Heavy blankets on the bed help a lot of people. 

Sounds like you’re having a rough time.  Treat yourself gently McLind. You are safe and things will improve. I wish you all the best for some restful sleep soon. Keep us informed. 

I had trouble sleeping too

by LondonAndy - 2023-10-31 19:16:10

Hi McLind. I got my pacemaker for total heart block in 2014, as a result of surgical complication when my aortic valve was replaced. Whilst in my case it is difficult to pin down the cause of some insomnia when recovering from so much having happened, as my focus eventually switched from the valve to the pacemaker I did wonder if the minimum set rate, 60bpm, was too fast for sleeping. I didn't think to ask about options at my first checkup, a few weeks after surgery, and so the next checkup was at six months. By then I think I had got used to the rate, and was sleeping fine so didn't ask anything.

I find that if I am having trouble sleeping there is no point lying in bed, trying to go back to sleep. Instead I get up and do something. Not much: washing up, watching a TV programme, stuff like that. Then 30 or 40 minutes later I can sleep fine again.

Medication can play havoc too, as Penguin has said. What are you on?

I don't know if any of that resonates with you, but just my experience. Best wishes with your continued recovery.

Not sleeping

by McLind - 2023-10-31 20:16:38

Thanks Guys. 

I am not on any meds so its defo not that. I think my pacemaker is set to 60bpm I hope to talk with someone from the pacer department in the next few days. I have sent them a message and they say someone will ring me. I think its posiable that the 60 rate is faster than I would normally have slept at. Some one has mentioned that there are deferent settings that can be used for sleep or a sleep mode. Dont know if this is true. 

Thanks for all your help in advance

McLind

Sleep problems

by Good Dog - 2023-10-31 20:37:37

Before I needed a pacemaker, and before I went into complete heart block, I wore a holter monitor for a few days. The reason for the monitor was that I was getting some disturbing arrhythmias. It turned-out that while I slept my heart rate dropped to as low as 35 bpm. I would not have know that without that monitor. However, I always slept like a baby. Never had a problem till I got my PM. So after getting it, they set my minimun rate at 60 bpm. I had exactly the same problem you are having. I just could not get a decent nights sleep. So I told the Doc and he suggested that we lower the minimum rate to 50 bpm and see if that would help. It did. I started sleeping really well again. I had always had a 1st degree AV Block (congenital) and Bradycardia which explains why my body was accustomed to that lower rate while sleeping.

I don't know if your problem may be related or not, but it certainly wouldn't hurt to run it past the Doc. Also, it is my understanding that some PM's have sleep settings (you mentioned in your previous post), but not all PM's have them. I really don't know anything about that. Just something that I read somewhere. However, it may be another option you can explore.

I understand how difficult life can become when you don't get a good night of sleep. So I hope you can get to the bottom of this. If you are able to resolve it, I'd be interested to know the story. So please keep us posted!

Best wishes!

Sincerely,

Dave

No sleep is no fun

by BradyJohn - 2023-10-31 22:39:28

I think I might call the clinic and ask to come in sooner and have them lower your sleeping HR to 50.  It helped me get better sleep. 

All the best, 

John

Common problem

by Lavender - 2023-11-01 06:00:35

Your brain is still in danger mode. It was traumatic to adapt to the idea of a foreign body in you. I'm sure there's an underlying thought process going on sorting everything out. You have to retrain your brain. 
I did two things:

Eckhart Tolle says to pick one object and look at it without any thought that mentally describes the color, shape etc. looking at clouds helps. You go blank and observe slowly moving your eyes to take it in. Indoors it can be watching a candle flicker. Quiet. Stillness. Several times during the day. It empties the thoughts and resets the brain. 
 

My other go to was given to me by a prominent retired psychotherapist. Go on youtube and look up Michael Sealey. He has any number of topics to retrain your thinking. Lie down comfortably. Put on headphones and listen. It's like a sedative. Listening several days in a row to the same meditation helps sink it in. He has a few specific to sleep. 
 

May God envelop you with a drowsy fog that reorders your brain. Be still and know that He is God. He is your strength. He will be in charge and you can relax. 💓

Sleep

by piglet22 - 2023-11-01 07:08:04

I haven't had a decent night's sleep for decades. The sleep like a baby long since gone.

I've forgotten what an uninterrupted 6 or 7 hour sleep feels like.

It's an age thing. You don't need a lot of sleep when you are older. I might get 4 or 5 hours but don't feel tired during the day.

Being retired helps too, not so much worry about work pressures, not getting up early etc.

If you have arrythmias then this can affect breathing and that affects sleep, as I've been finding out recently.

I like a small amount of low-level lighting, I don't like pitch black. I like to listen to the radio, it's like a drug. Just gentle BBC Radio 4.

There are definite good and bad times in sleeping. An initial good period and a later good period. The in-between 02:00 to 07:00 period is the worst.

Don't mull over problems. A 03:00 problem is ten times worse than an 08:00 problem. You might get a brainwave, but unlikely.

Make sure you have things to look forward to, nothing too exciting though.

LondonAndy

If I were crawling up the wall from sleep deprevation, nothing in the world would get me to do housework. The thought of pulling on the Marigolds at 04:00 is the stuff of nightmares. Even when wideawake, it fills me with terror. Only the thought of not a plate left to eat from forces me to get the Fairy Liquid out. Even that has been known to fail and the contingency supply of picnic plates comes out.

I knew someone worse than me.

I worked for an old farmer once. His wife did everything. If she went away, she would fill the freezer with meals. All he had to do was get the plates out. When the plates ran out, out came the newspaper. True story.

Caring for Someone Else

by Penguin - 2023-11-01 07:51:32

Hi again, 

To answer a question, 'Is there a sleep mode' - yes, most pacemakers have them. It's a lower rate that will apply at certain times of night or when you are inactive (manufacturer dependent). Ask about this when you ring the clinic if you think it will be helpful to you. 

I also see from your bio that you are caring for your wife.  Could this be something that is playing on your mind? I imagine there is always the worry of how you will cope with your caring responsibilities when feeling worn out yourself?  Tough to take care of yourself when caring for someone else.   Perhaps it would help to talk to your wife and other members of your family (supporters) who could help out whilst you get this issue with sleep sorted out. 

It can be hard to put yourself first for once! 

Piglet and washing up!

by LondonAndy - 2023-11-02 15:41:59

As we're not that far apart, sounds like next time I have trouble sleeping I should come and do your washing up!!

Not sleeping

by McLind - 2023-11-12 14:07:17

Just to bring you all upto date. 

I have had a week now of better sleep. It seems to be improving a little most nights. 

I have managed to stop all nassel spays. They work but you seem to become dependant on them. I only use a salt water solution to rinse the nassel passage if it needs it. This has only been once in the last 3 nights.

I have been to some therapy as I was struggling with what has now been classed as PTSD. The talking really helps. I will have to wait a week or 2 for the PTSD therapy.

This site really helped me when I found you. You haad answers to questions and for that I thank you all.

Feeling so much better with more energy now. This is all improving on a daily basis. 

Thanks Mclind