I’ve been having more frequent nightmares, REM Sleep Disorder episodes. My first experience of tumbling out of bed fighting an evil shadow! I am even having unpleasant dreams about my dreams (dreaming that I’m having a nightmare).
I’m wondering if any of you who also have these, have found they are influenced by:
What you eat? Amount of carbs?
How late you eat?
Watching TV?
What time you exercise?
C-PAP
Meditation or Qigong practice?
Anything else specific that either increases or decreases them (aside from meds or melatonin)?
Thanks!
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rebtar
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I started to have those nightmares 5 years before diagnostics. But after I started HDT and I got my confidence back they went away. Very, very, rarely I have them now.
Unfortunately, HDT didn’t work for me. I tried many different doses , and it just gives me stiffness and pain in my hips and legs. I do get 100mg in a B multi. That doesn’t seem to cause problems. But raising it even to 200 per day does.
I take melatonin -- 12mg. I'd prefer to find an alternative to clonazepam, although I'm not against it exactly. I've known some people who have taken it and found it difficult to discontinue. So I'm just looking for other factors that can help.
I am only the caretaker and I am on 10mg per night. I have no sleep problems, and never had. But the exhaustive material that Art has posted convinced this 68 year old that it would be beneficial. And it is: I feel refreshed on rising.
My spouse, PWP is on 30mg per night, on her way to 70mg in a couple of weeks. At least that’s the plan.
My advice is to go big on Melatonin. This is what I use at present
Here is an extract from a very long article by Howell & Schenck - MD’s
“Although small controlled trials have failed to show consistent improvement with pharmacotherapy, the authors' experience is that both melatonin and clonazepam are effective in suppressing rapid eye movement (REM) sleep behavior disorder (RBD) behaviors in the majority of patients, and that melatonin may be better tolerated, particularly among older adults with neurodegenerative disorders...
...By an uncertain mechanism, melatonin in high doses at bedtime (6 to 18 mg) augments REM sleep atonia and improves RBD symptoms. Lower doses are generally not effective.”
Thanks -- something to consider. I took melatonin at this dosage for around 1 1/2 years, then started feeling more depressed and sluggish in the day time. I attributed it to the melatonin, but may not have been that. I'll experiment again, see how it goes. Would be nice to get rid of these nasty dreams...
Do you find it makes a difference between the dissolve under the tongue form (more rapid effect) and capsuled or the like that have to be digested? Or the delayed release type?
Can’t tell the difference. I for one have only taken the sublingual and my spouse takes a regular tablet plus the sublingual.
There has been no daytime sleepiness. And this was what I feared most, as she still works.
She currently talks in her sleep and her arms twitch. So I know where this is heading. Hopefully the Melatonin can cut it off.
I would suggest you start with the sublingual. It is very easy to take. And once you are comfortable maybe you can try Melatonin 1-2-3. One tablet at 8pm one at 9pm and one at 10pm - bed time.
(Suggestion from Art - chartist )
Yes we should all be in bed, in total darkness by 10pm to sync with our natural nocturnal cycle.
And no TV or screens of any type one hour before bedtime.🌺
Thank you for the reminders. So sweet.I use sublingual and have used prolonged release. Last night I increased from 12 to 15 mg sublingual (I use Pure brand), and my sleep was better although not quite as long as I would like. According to my sleep tracker, no awakenings in the first 5 1/2 hours! REM cycles also look better. I did have a dream with negative content but not a nightmare or RSD dream.
So thank you, taking a higher dose just may be the thing.
I use blue light blocking glasses at night most of the time, and do avoid tv within an hour of bed although I read on a tablet sometimes, but with blue light blocked.
In bed total darkness at 10pm? More like 11 fir me but I will work on pushing that back, I know it’s better.
Art, if you’re reading this, I’m curious what the rationale is for the 1-2-3 melatonin schedule? Melatonin is supposed to peak and be produced in large quantities after 1 or 2 am. If this is in your posts don’t need to answer here, I’m going back to re-read them.
I do believe that it is to mimic a delayed release effect. So the 1-2-3 Melatoin do not apply to sublingual tablets, as these tablets are instantaneous, by passing the stomach.
I do something similar in that I use 500mg of L-Tryptophan, to get a delayed melatonin release. It breaks down like this: L-Trytopan - 5HTP - Serotonin - Melatonin.
And for those who think this might be an overload, I do remind you that as much as 80% of the L-Trytophan goes towards making Niacin 🌺
I thought you’d be interested in my experience increasing melatonin, which I wouldn’t have done without your suggestions.
I increased to 18mg which helped a bit, but I still got only 5.5 and 6.5 hours of non optimal sleep. I’m used to a minimum if 8 hours, pretty much throughout my life, to feel at my best the next day, so this is really not enough.
Last night I took:
3mg prolonged release at 9:30 pm, 20 mg capsule + 3 mg prolonged release + 6 mg immediate release at bedtime 10:10pm. Asleep around 15 minutes later. Slept 7 hours without waking. Much better!
So now instead of staying in bed a while in the morning “trying to sleep” which we know isn’t a good idea, I’m up and will exercise early and get my day going. Plan also to try the broccoli seed protocol. Hopefully things will improve further. Thanks!
I discovered on my honeymoon in 1960 (I was 18, he 20) that my husband had REM sleep disorder, though I didn't have a clue that is what it was. He grabbed my pillow in his sleep, and wham, my head hit the mattress! I lived with HIS disorder for 58 years, until he died this last February.Nothing that I know of, affected his sleep disorder one way or another. It was not a fun situation for me, but it never bothered him in the least.
When he developed sun downing (he would wander off in the middle of the night) I found the only thing that stopped it was melatonin given around 4 pm (before the sun went down)and again at 10 pm. It was a total life saver and kept him out of the emergency room and from experiencing hypothermia. Unlike when I found him laying in the dirt 1/4 mile away. Melatonin is wonderful and had no side effects.
My husband has these Sleep disorders and had slight episodes over the years. Fast forward to PD dx and much more frequent. Mostly kicking, fighting punching talking and shouting and chasing, when dreaming. Sometimes I move sharpish to another bed room. Up to quite recently it would be quite frequent. We noticed that since his red light hat use- started around September last year, then added in broccoli seeds from October, these episodes are less frequent. Nothing else has changed and last dose of C/L 3 30 in the afternoon.
Just found this link about REM sleep and half way down thread another person has found relief with a red light coronet so there might be something to this.
I had frequent REM sleep behavior disorder (RBD) episodes for several years. Some, in which I would act out fights or other violent dreams, were quite alarming, especially to my kids. But I have not had a single RBD incident in the year or so since I started sleeping with a weighted blanket. I got it for about $30 from Amazon. It has not only eliminated the RBD problems but has drastically reduced "nighttime anxiety" (those horrible long early-AM hours of anxiety-induced insomnia) and greatly improved my sleep overall. I was skeptical, but I am very glad I gave it a try. And no additional drugs to take, obviously, which is a plus.
They have a variety of sizes and weights. Here's a link:
My husband used the Vielight 810, which is a red light devise. It helped his over all cognition, but not his REM sleep disorder. It's possible it helped some, but I was no longer able to sleep in the same bed with him to find out. His kicking and hitting would start about 20 minutes after he fell asleep. Thank you for you kind words of sympathy for the long journey with him. I'd say he accomplished what he wanted in this world, was a good provider, loved his kids and was grateful that the end had come. He rallied after doing nothing much but sleep, went to a Super Bowl party with friends and family and died suddenly 2 days later.
I would try, not 1-2-3, but rather 2-3 or 1-3. Nothing wrong I think with taking first dose a couple hours before bed, then a strong dose at bedtime, and then if you wake mid-night with 3-4 hours to go, another dose but not of CR or SR but just IR. If you want to put in some CR or SR as a kicker to the immediate release, then that's fine. If you don't have to work in the morning, then you can take that last dose later if you prefer.
Dosing: Usually I take a 5 or 10 regular pill first, before bed, up to an hour before bed, and generally I have to rise to deal with the dog or a bladder call mid-evening around 2-4 a.m., and at that point I will take another 5 regular...which you can double if you want...more is harmless by the way, you may have a sleepy hang for the morning if you don't just get yourself out of bed...snoozy kind of effect but only if you are not up in the first place, if you are up you don't really feel any tiredness hanging about.
Any time, no matter when, if I think 5x didn't work, then I do 2x5...and so can you. I then also make sure that I have that late 2-4 a.m. "booster," because in my own case the level in my plasma falls off fairly quickly (others may experience the same, or they may differ somewhat). If the BSD or RemSlpDis is problematic or stubborn, just add another pill and use that as a test case, and you can titrate either up OR down from there, quite safely.
Of course there will always be someone who has the opposite reaction, they are rare but every chemical has their persons whose personal chemistry creates what they call "paradoxical" sometimes, because even one single mutation in a single gene or two in a single chromosome can cause the odd individual to react differently or oppositely, so don't grouse if you happen to be one, when you have computer code of several billion lines of code, it is easy for the ever so often oxidative radical to have poked a hole or some other chemistry mucked up. Doesn't mean it won't work just fine for the other 99 in 100, or 950 in 1000, cases, just not yours...and trying it is pretty much the only way to find out if you are one of those.
Seems to me that what works in my case is "bi-modal," that is, a gradual dropoff of what is in my system generally needs a refresher to get me through the rest of the night without a nightmare or negative dream.
Over time or years you may increase. Higher doses are harmless and for some may be the only thing to do.
I think the 5/5 (which is 5 continuous and 5 time release) can be doubled any time. But to really stop the nightmare, that second, mid-bathroom-dog-potty time up, usually after 3:30-4:00 am, does need that 5 or 10 immediate release.
Nice thing about the immediate release melatonin is that it falls out of your system quickly so if you take a booster at 3 a.m., you get very little side effect hangover, that is, once you get your butt actually out of bed... and in that, melatonin is very much like antidepressants, when you might have some morning grogginess but it fades quickly once you are actually up and moving.
Now with an anti-cholinergic antidepressant such as the tricyclics, using at night to help sleep, you have to work harder to get up out of bed, then you are fine, and it is rather less effort to do if you are using melatonin. If you had responsibilities to do things in the morning and be safe, then melatonin, and then these tricyclic anti-D's are the best, with clonazepam last because clonaz will indeed create a bit of a drowsy-harder-to-rouse effect if you go over 0.25 mg of clonaz...so if you are driving or using machinery in the morning it is best to reserve clonazepam for last or take it a couple hours before bed.
Not mentioned are the anti-histamines, really for that you want the old time Benadryl (diphenhydramine), if you've not had it before then 50mg will put you out for a good bit and that's a pretty standard dose. But I prefer melatonin first, and for times I just cannot feel rested, clonazepam. Because you can take melatonin and it will suppress the dreams, but you might not feel actually rested, and clonazepam is really better for that "rested" feeling. I must occasionally have clonazepam because I am on duloxetine, and it's got a serotonin-norepinephrine-boosting effect and so the stimulation pushes me into not getting rest very well, and the klonopin counters it properly to allow actual rest, otherwise sleep just results in a gradual encroachment of "tired stretched-fatigue" rather than "rested." In my case, both melatonin and clonazepam attenuate or even cancel the REM sleep disorder, but only clonazepam results in feeling rested, melatonin is sometimes just too weak to counter the stimulant action of the duloxetine. Been with this combination for about 5 years and would have reached this combination even if I didn't have clinical psychopharm training. Bottom line: both melatonin and low dose clonazepam are excellent and benign for chronic use of REM sleep disorder, and my own personal neurologist heartily concurs.
You get some experience with these under your belt and you will find it comfortable to vary things around to suit and find your best solution for any particular phase you are in, flexibility is generally very forgiving with these...
And if you bump your doses, definitely then melatonin seems to have that "some is good, and if it isn't, some more may or may not do anything, but then a lot is better, oddly" influence, some people swear by 50-100 mg melatonin. So if you find yourself needing to amp some doses up, do it with the melatonin first and with a high potential ceiling. The dose-effect curve of melatonin seems to be, as I was trying to verbally illustrate, shaped like a long letter "U"... some is fine, a bit more harder to tell if there is much added effect, and much seems to return to fine again, and mel is the one with the virtually harmless profile no matter the dose.
Now if all of this seems a bit much to absorb, just read it again, and maybe again. I got through many years of college and graduate school only by reading things 3-4 times, not once. Wouldn't have gotten out of high school if not for that little realization...which my teachers told me would happen...they actually knew about how we learn from books. Once a professor asked me what was the real purpose of final exams...for all the hoopla and pressure and drama around them, really, why? I gave about 5-6 reasons and none of them were correct, he said. "What? Then WTF?" I said. (He was pretty tolerant so his students did take some license.) So what was the real reason? "To get you to go over the material one more time. That's all. See, if you are not wealthy or connected, then you may actually need to learn this stuff." Who would have guessed.
Is your preference for melatonin over clonazepam the safety profile, or the morning sleepiness issue? If clonazepam leaves you feeling more rested why not use it all the time?
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