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help - no sleep
Posted: Sunday, March 10, 2019 1:46 PM
Joined: 3/9/2019
Posts: 2

my father has lewy body dementia and is not sleeping well.  it was about every 10 to 15 days when we'd go for 24 to 48 hours without sleep.  then it progressed to once a week.  this last week it was 50 hours solid and then maybe 4 or 5 hours a night.  has this happened with anyone else's loved ones? and how did you deal with it?
Posted: Sunday, March 10, 2019 6:29 PM
Joined: 2/29/2016
Posts: 1268

I assume you have covered the basics: no caffeine after morning coffee--that includes tea, soda, chocolate; daily exercise within his limits of tolerance; keeping him awake and engaged during the day. You might consider encouraging fluids during the day but limiting them in the evening in case a full bladder is contributing to his wakefulness. Springing ahead for Daylight Savings Time does not help matters. A lot of people here have had success with melatonin. It is over the counter, well tolerated, and can be increased fairly rapidly...but of course check with the physician first for interactions and contraindications. Avoid any OTC product with diphenhydramine (Benadryl); it can interact with other medications and can have unexpected effects in the elderly.

I understand that LBD can be more challenging in terms of behaviors and medication management. Perhaps the PCP can help you with a referral to a geriatric psychiatrist or neurologist with expertise in dementia and LBD in particular.

You must be exhausted.

Posted: Sunday, March 10, 2019 10:15 PM
Joined: 2/3/2018
Posts: 330

Iam's right, see your dad's doctor, if they have no suggestions they can hopefully refer you to a geriatric psych doctor. That's what we did last spring when Mom was not sleeping much, and the psych doctor suggestion mirtazapine which worked great for Mom. We still have some sleepless nights, but not five in a row like we were!

Good luck.

Posted: Tuesday, March 12, 2019 1:11 PM
Joined: 3/7/2019
Posts: 9

My LO had a mild case. The hospital recommended melatonin and it only worked for a short time. His doctor tried sleeping medication  but it was expensive and made him violent. Fortunately, he started sleeping  again. Since your situation is so much worse, I  would check with your doctor. I wish you the best.
Posted: Thursday, March 14, 2019 12:48 AM
Joined: 2/15/2019
Posts: 3


Is father living at home or with you or in care facility? Is wandering a risk?

Went through almost same exact thing with my mother that was living with me (except with Alz, not LBD) - lasted for about 18-20 months. Can recall 3 or 4 instances when she went 48-50 hours straight without sleep. Other times, she would sleep only 2-3 hours a night. All along, I was working full time and struggling to function - even fell asleep at wheel driving to work one day and bounced off concrete barrier, surviving only by Divine Grace. It was hell, honestly don't know how I made it through that phase. Sooo tired all the time, found myself frequently losing my patience with her and screaming at her which only made things worse and which I so deeply regret now that she is gone.

Tried all the common suggestions listed by Iamnumberfour above. Also tried to keep her awake and busy during the day to prevent napping, but I was so tired that I would give up and fall asleep when she would nap.

As far as medications, tried mirtazapine, trazodone, or up to as much as 10mg melatonin. The trazodone or melatonin worked somewhat and would get her to fall asleep in about 15-30min, but that would only last about 1-3 hours until she was up again. Echo Iamnumberfour caution against using Benadryl (diphenhydramine) as I have heard it is not recommended for use in dementia patients (many OTC "sleep aids" such as ZZquil have this as active ingredient).

All this said, I regretfully don't have an answer for you - but know that we sympathize and ask that God grant you the strength and resilience to persevere.
Posted: Thursday, March 14, 2019 8:11 AM
Joined: 6/24/2012
Posts: 294

My mom recently started taking Seroquel which the nurses tell me helps with sleep among other things.  Mom has no official dx because she won't go to a Neuro.  But she did express to me years before we moved her that she would have weeks where she barely slept.  And she told me about it as a curiosity.  And the stranger thing was that she did not experience fatigue with it.  So not knowing about LB, I am no help, but for sure try to get some help with meds.  

Does your father get into trouble at night or is he just awake?  

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