As someone with Lewy Body dementia, I struggle with the nightly horrors of the night, namely the horrible nightmares,which don't seem to go away, and can not be stopped.

I have tried all sorts of things but the only thing that helps is, a process I have started using on a night.

I have some relaxing music on my MP3 player and I listen to this through my earphones, and either drift off to sleep with the music still playing or I switch the thing off after a while when I am totally relaxed.

This does not always work, but I was getting desperate to try something new as nothing was working at all.

It had been suggested that I try some mild tranquiliser medication, but I am terrified that I will get into one of these nightmares and will not wake up from it.

I can vaguely remember having nightmares when I was young but they were nothing compared to the ones I have these days.

My heart goes out to all who suffer from these nights.

Ken

Ken,
Sorry to hear about the nightmares. It sounds like you've developed a great technique for avoiding them. I've never heard of someone not waking up from a nightmare...perhaps you could ask one of your MDs about this. Are you working with a good MD?
Robin

Hi Robin
Perhaps I should explain. I sometimes wake up from them and other times they are difficult to shake off as they are so graphic and can go on for some time.

My MD does not deal with this type of problem and refers me back to the hospital when he has to, as they are the only ones who are experienced.
However from the comments I have heard from others this type of thing happens a lot in this illness.

I have to return to see the hospital consultant later this month, so I should know more by then.

Ken

Hi Ken - Let me preface this by saying I don't have LBD (that I know of, anyway) and I have very vivid dreams and most nights I have nightmares. I have talked with my dr. about this - vivid dreams and nightmares have been part of my life since I can remember but are more frequent since I had to start taking some meds last Dec. When I went for my yearly checkup the other day my dr. suggested I take a light duty prescription sleep aid because she thinks I am not getting enough sleep because of the increased dreaming. I started that a few nights ago and now I don't seem to need 9 - 11 hours of sleep a night like I have been since I started the meds in Dec. Perhaps you can ask your dr. if something like Ambien or another sleep aid would help you. And, more often than not I do not wake up from nightmares. They have to be REALLY scary for that to happen! I hope you can get some help soon. Lynn

Ken,
I am sorry you are dealing with these night terrors but I am glad that you have found a way of helping them not be as vivid with the relaxation.

Be well!

My consultant put me on mild medication which was supposed to help, but it only made things so bad I ended up crying to come off them.

It was also at this point that my wife and I realised that I could not break out of the nightmare, so perhaps it was a case of drop it, or end up with something more serious, as I was by that point trying to get out of the bedroom window in an attempt to get away from the horrible nightmare.

The consultant then said that it had to be down to the Lewy Body's, and there was nothing she could suggest, apart from coming off the Exelon, something I really don't want to do, as it has helped me so much.

So your neurologist is convinced the Exelon is causing the nightmares?

I had these problems just before I went on the Exelon, so we think its the illness rather than the medication.

But as the consultant has said, it is a big risk to come off the Exelon just to see what happens.

As long as things don't get any worse, I will just have to try and cope.

Ken

Yes. That is what Del is like when he is in a delerium. Walks and talks but doesn't make much sense. See my other post. He's on a 72 hour hold right now. Like your Dale, sweet and nice....no anger issues.....until.....It's a tough day today. Nan

Nan, you and Del are in my prayers. Bernie

Thank you for this, as it makes me realise that I am not alone with these horrors, which can be very disturbing, to me and upsetting to my dear wife, who has to watch it happening.

It is bad enough having a bad dream or nightmare, but when you are unable to get away from it on waking up, it gets distressing.

Ken