Does anyone here have sun downing? My husband kept rampaging every night and acting crazy most nights, some worse than others. Finally, I woke up one morning about 2 weeks ago to find him missing. All the doors open, pictures torn off the wall and the glass dining table top laying on the rug.
I finally found him about 1/4 mile away (we live out in the country on 22 acres, surrounded by many more, in wild country) . He had stumbled down a hill and was laying in the dirt. I saw him in the distance because he'd been wearing a bright sweatshirt. He was trying to smooth out the dirt to find a place to lay his head. They threw his clothes away in the emergency room because they were so covered in stickers and dirt.He had hypothermia (temp 91) and an ambulance took him to the emergency room.
There he was found to be physically fine for a man with Parkinson's, just mentally so messed up. He still doesn't remember any of it. He recently turned 80 and has had diagnosed PD for around 7 years.
A fellow who was in charge of deciding if patients should be admitted to the hospital came to talk to me. Although, my husband was going home, he said i needed to get help for myself, that 50 percent of caretakers die before the person they care for.
He mentioned that they don't like to put elderly people in care homes because they often start sun downing.
I went home and looked it up and there it was right in front of me, that is what he has been doing for so long, getting crazy come evening, and then roaming at night, trying to sleep.
The reason is that elderly people with dementia don't react well to dusk with less light, their body clock is all messed up.
The online advise was to start giving him melatonin around 4 pm, ( used 10 mg) before the sun goes down. I did that, and then another dose of 10 mg around 10pm.
The results have been amazing! He has not gone nuts even once, for 9 days now. He can talk sensibly again, he drove the car to his support group with me, he played 4 games of chess with a friend today. He has been sleeping well and having dreams instead of nightmares. Supposedly the melatonin restores the REM sleep.
I would never have though some doses of melatonin could help like this.He had been taking two every night at bedtime for years, but the 4 pm dose is new. We couldn't do anything or go anywhere any longer, he was so totally out of it,and now I have some hope for as long as it lasts. We can get back to using his Vielight and see the benefits we had from it in the past before he started sun downing
Another benefit is that help was arranged at home by our insurance company, thanks to the intervention of the man who talked to me at the hospital, and my husband is getting physical therapy to help with his balance and an RN who is keeping an eye on him weekly.. His posture is already more upright and he is walking better.
I'd be happy if even one of you find this helpful. I am a former RN and I knew nothing about sun downing. His doctors just kept giving him other meds to fight psychosis. I'm not giving up on those , they help too, but nothing helped as quickly a the melatonin.
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rhyspeace12
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I saw this phenomenon in the mother of a friend, who had dementia. It can be very scary as they can become very paranoid and feel that family, caregivers, relatives and friends are plodding against them or trying to steal from them and will often hide things like keys, money or things of no consequence such as toilet paper.
Melatonin is well known to be effective for sundowning, but doctors often do not mention it to their patients. At a minimum, they could prescribe melatonin receptor agonists since that is in their repertoire of prescription drugs, but sometimes they just don't, unfortunately!
The following abstract from 2000 shows that this information about melatonin for sundowning has been around for about two decades or more and yet doctors seem unwilling to consider these studies and recommend it to the families of dementia patients, at least some doctors.
The way you are spacing out his melatonin should help to restore his circadian rhythm to a closer to natural state. Melatonin is effective in dementia for more than just sundowning and sleep. It also offers some resistance to neurodegeneration and more in AD and PD. Again, showing some of its relatively unknown health values.
Have you given any consideration to very low dose lithium orotate (LO)? LO may help to forestall dementia also, possibly keeping your husband stable well into the future. The very low dose LO (less than 21 mg /day) has a very good safety profile compared to the standard dosing in the 600 to 1200 mg+ range which has a fairly poor safety profile.
I used lithium orotate for awhile and didn't see any difference. I will check back into that if he continues to do well on the melatonin .I have to look to see the mgs. i was giving him. I try practically everything that comes along as a suggestion that won't hurt him.. Nothing can work while sun downing is going on. Psychosis can be dealt with, but sun downing was impossible, nothing i said could get through to him.
I can't really give advice on dosing as I am not a doctor. I can tell you what I take and have taken in the past. Currently I am taking 30 mgs / day. Previously I have taken 3 mg to 70 mg/ day. The 70 mg dose was based on a study in children that were given 70 mg / day. The dosing below 10 mg / day was what I used to take decades ago.
There is an Italian researcher named Lissoni P. who has been researching melatonin for over a decade and found that 20 mg of melatonin per day increased the life span of certain cancer patients compared to the group that received only chemo and radiation. Lissoni P. was involved in three studies of this nature and all three studies returned similar results. I think there may be significance as to why Lissoni P. never tried different dosing, but that point is not discussed in the studies.
I suspect that dosing is as individualized as it is with B-1. Consider Despe's husband who finds 3 mg/day to be too much compared to me who finds 30 mg/day to be not a problem. I have seen other members report 5 mg to 20 mg daily dosing. For me, as far as getting a consistent sleep benefit, I have to use that melatonin 123 method, otherwise, melatonin is not a good sleep aid for me while other people report that one dose before bed delivers good sleep benefit. This information should give a clue that there is no exact dose for melatonin in everyone.
My husband was taking at least 6 mg. with his late night medications, but it wasn't until I added the 10 mg at 4 pm, or close to that time, that it stopped his sun downing.
Thank you for this information, it is fascinating. I'm wondering why his motion specialist seems to know nothing about melatonin. He is a man who will usually look into things very carefully and has been a big help with my husband's psychosis. I do know that with Parkinson's, everything changes constantly.
Some information can be hard to find unless you specifically try to look for them after problematic experience. This happens to all no matter how careful, and often takes time before history supplies enough anecdotal evidences especially in the realm of unregulated supplements. Product marketers flood the internet with positive information and studies so they make it even harder to keep making profit - this is a billion dollars market.
Thank you for this post! My mom has been sun downing this past year. We didn't know what was going on. My dad would just call me freaking out saying your mother won't listen, she is going crazy blah blah blah or she would be arguing with her caregiver saying she was hiding her things etc.
We just got her results back yesterday from her Dementia testing and they told us she has major neurocognitive disorder, dementia secondary to Parkinson's disease.
I am going to let my dad know about the melatonin dose earlier in the evening.
She already takes a 10mg slow release melatonin right before bed. I will have him add the earlier dose.
Do you know if the mg amount matters for the early dose?
Thank you, my mom tolerates the 10mg slow release melatonin at bedtime just fine. Her neuro is aware she is taking it. I am going to check with her neuro that it is ok to add the 10mg at 4pm before we start it.
I didn't check with his doctor; I just did it. Anything was better than the two horrible nights in a row he had. I will mention it the next time we visit as I always have to take all his meds along with me at each visit.
I don't know if it matters, it's just what i had on hand.
She could also have psychosis which is what we dealt with first.He was given seraquel for that. I answered a question a little further down discussing all the meds he was given for psychosis. I'd be glad to answer any other questions you have; i have been flailing about for so long, I'd like to stop the rest of you from having such despair over what to do..
I find your information very beneficial!! Thankyou so much for sharing! It gives me hope there’s more I can do! My husband has Parkinson’s. Diagnosed 6years ago and is 76. I feel sundowning is creeping in but wondered if you could touch on his psychosis? As in, what was happening to him and was it all day long? Drs aren’t helping as much as I would like so I try other things to see if anything gets better for him. I feel he has dementia due to his confusion and hallucinations. Thank you again for sharing!
He started getting psychotic about 3 years ago. He would rage around all day, tried to fight with me, tried to protect me from an intruder (in his mind) fell and badly hurt his leg. He was hallucinating something awful (people playing games in our yard, 250 people pushing our travel trailer.) Seraquel stopped that. He also would make noise all day long, yelling,whining. The psychiatrist put him on Mirtazapine and added 1/2 tab to his daily Atenolol. The noise all stopped. He also takes a lorazapam each day when needed.
Nothing stopped the sun downing until the latest dose of melatonin.
Rats, knocking right out sounds good! On a semi serious note, Nuplazid might help but it is very expensive. I imagine you could get help from an assistance group.
I heard it doesn't work any better than Seraquel. Maybe adding a few other drugs like we had for psychosis would help. I was amazed that adding more to his atenolol, which is for high BP, helped with the psychosis.
I'm reporting in again. My husband hadn't sundowned for over 2 weeks while taking the melatonin. Then he started in one evening, and I couldn't figure out why. It dawned on me the next day,that I had gotten home from running errands late ,and he didn't get his melatonin until 6 pm,instead of 4 pm, before the sun goes down. He finally went to sleep at 3 am and didn't try to wander outside. I thought this was a good example that the melatonin really does work. He hasn't had another episode.
He has been sleeping a lot during the day and also sleeping at night. I think his brain is making up for all the craziness it went through for the last year. .
Thank you for this update! I just hate it when people forget or don't have time to come back and update. I'm very happy to hear that things are working out for your husband and your sharing this information with the forum is very caring of you! Perhaps you should share this information with his doctor just in case he can pass it along to another patient who may be able to benefit from melatonin also!
I am going to share this with his GP on Tuesday. We had the misfortune of his motion specialist/neurologist leaving the practice here, and that will be the next adventure, trying to find one in his health plan to keep getting his PD medications..We've had some real doozies. As the nurse in the GP's office said, "Those neurologists are a strange bunch."
We had to change our lives in so many ways because of all the effects of the sun downing. Now I see his basic intelligence back. I don't know how much dementia he has, but he passed the written test for his drivers license a month or so ago, and that amazed me. He missed only one and didn't need his glasses.It did take a big toll on him for a few days afterwards due to the stress. I seem to check his every utterance to try to prove he is still there.
I have looked at side effects, but the melatonin is working for the sun downing ,which makes life unbearable, so it is the best of two evils. Nothing ever seems to work for Parkinson's very long, a new problem constantly turns up,
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