I know I am not the only person here because if REMSBD, and I think this might be of interest to others also:
The fast and dirty: For REMSBD take 2 mg of melatonin AT THE SAME TIME EVERY NIGHT 30 minutes before bedtime. Go to bed AT THE SAME TIME EVERY NIGHT. If you can't hit the time one night, skip the melatonin (better to skip than to take early or late). I have requested to change my work shift so I can get to bed every night by 9:30 PM.
(edit: I removed the link to the pre-published version of this article. Was silly to include it).
Melatonin is recommended as a first-line treatment in isolated REM sleep behavior disorder (iRBD), although no large patient group has been reported. To assess effects, time course and confounding factors in the treatment of patients with iRBD using melatonin, 209 consecutive patients were included in this single-center, observational cohort study. A total of 171 patients had taken melatonin according to our chronobiotic protocol (2 mg, ≥6 months, always-at-the-same-clock time, 10-11pm, corrected for chronotype), 13 had applied melatonin for about 1-3 months, and 25 underwent mixed treatments. In total, 1529 clinical evaluations were performed, including Clinical Global Impression (CGI) and a newly developed RBD symptom severity scale (Ikelos-RS), analyzed using linear mixed models. Validation of Ikelos-RS showed excellent inter-rater reliability (ρ = 0.9, P < .001), test-retest reliability (ρ = 0.9, P < .001) and convergent validity (ρ = 0.9, P < .001). With melatonin, RBD symptom severity gradually improved over the first 4 weeks of treatment (Ikelos-RS: 6.1 vs. 2.5; CGI Severity: 5.7 vs. 3.2) and remained stably improved (mean follow-up 4.2 ± 3.1years; range: 0.6-21.7years). Initial response was slowed to up to 3 months with melatonin-suppressing (betablockers) or REM sleep spoiling co-medication (antidepressants) and failed with inadequately timed melatonin intake. When melatonin was discontinued after 6 months, symptoms remained stably improved (mean follow-up after discontinuation of 4.9 ± 2.5years; range: 0.6-9.2). When administered only 1-3 months, RBD symptoms gradually returned. Without any melatonin, RBD symptoms persisted and did not wear off over time. Clock-timed, low-dose, long-term melatonin treatment in patients with iRBD appears to be associated with the improvement of symptoms. The outlasting improvement over years questions a pure symptomatic effect. Clock-time dependency challenges existing prescription guidelines for melatonin.
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It means I typed it wrong: If you can't hit the time one night, skip the melatonin (better to skip than to take early or late). Corrected. Sorry about that.
Oh for heaven's sake. That study has a section that explains why I've been having such a hard time. I don't want to give details, but I'm rather annoyed with a doctor that should have known better. Thank you for posting this Bolt_Upright I'll be able to discuss this with my new doctor next week (my appt got moved due to her having a family emergency).
I will be interested to hear what you find about slow release, or how you come to a decision. I've put it on my list of questions to ask the doctor, but won't see her until Thursday.
Updating to say that 2.5mg lozenge, 1/2 hour before bedtime, is working incredibly well for me. Consistently getting 7 hours uninterrupted sleep! Although I have made other changes too:
1. Reduced household lighting 2 hours before bed (with laptop "Night Light" enabled); no blue light or blue light filters 1 hour before bed. This alone makes it hard for me to stay awake until bedtime.
2. Automatic lighting set to turn on in the morning.
3. Daily exposure to sunlight.
4. Various other 'good sleep hygiene' practices (but those haven't changed in several years).
I have found that the effects of time release tabs linger into the next morning (for me; someone else may react differently). I'm not a fan of anything that interferes with an energetic morning! Too bad I can't tolerate coffee.
Hi crimsonclover: I am following the schedule but still using 10 mg fast release. I take it every night at 1 AM and go to bed at 1:30 (I work till midnight. Trying to get onto days).
No excuse for not switching to 2 mg except don't feel like going to the store (I'm usually depressed). I'm also messing this up probably by not getting up in the morning. I usually stay in bed until I have to get ready for work at 2 PM. I'm trying (but not hard enough).
It says that people prone to certain medical conditions (including depression!) need to talk to a healthcare provider; they may not be able to use melatonin.
If you scroll down the page, you will see depression is also one of the symptoms of having too much melatonin.
Can you stop taking it, at least until you can try the lower dose? Frankly you've seemed much less communicative in this past week or so than any other time I've heard you.
Thank you so much crimsonclover. You know when I started Melatonin I posted that it was making my depression worse and people said "nah". I also see autoimmune on that list. I have Hashimoto's Thyroiditis. I am reviewing all of this seriously.
I have not been communicating the last few days because I was in a time-out because HU robot thought I was spamming when I copy and pasted my Zeolite warning to a bunch of people. I had to beg for my access back
Yeah, I do think it is really important to listen to your own body. That was my mistake with melatonin, because I was aiming for 10mg without really taking the time to assess the lower doses. Which isn't to say that I'm against 10mg, or that I won't ever 'go there'... just that each person needs to pay attention to how their own body is responding, not what someone else is doing.
Anyway, best of luck. I hope you're able to get days soon.
Another thing, I would definitely be open to Dr. Neel's protocol using melatonin. So I'm not against it, just that I personally will be taking low doses (unless my doctor advises otherwise)/
Always-at-the-same-clock-time, between 10 and 11 pm - corrected for chronotype). Chronotype is the natural inclination of your body to sleep at a certain time, or what most people understand as being an early bird versus a night owl. In addition to regulating sleep and wake times, chronotype1 has an influence on appetite, exercise, and core body temperature.
Maybe my "chronotype" is going to sleep at 2 AM? Or maybe I have just made it that way? Time to get back to rising with the sun and sleeping with the moon. Seems like better odds of success.
The combination of four common observations found in the three patient populations pointed us to the assumption that the circadian clock is involved: (1) a positive response occurred only when melatonin was administered within a narrow time span between 10 and 11PM; (2) responders and nonresponders were best differentiated by a stable clock time of administration, as opposed to flexible administration due to regular prescription guidelines (eg, “at bedtime”, “1-2 hours before bedtime” or “after meal”); (3) a gradual response over weeks; (4) a persisting effect after discontinuation of treatment. Based on these observations, we have developed a “chronobiotic protocol” for the use of melatonin treatment,17 which we validated in two small sampled RCTs.
Melatonin does so much in the body with protective influence on all organs to name just a few of its benefits and magically "it is made in the body" like it has special purposes in the body or something. 😉😉😉
Unfortunately melatonin production declines in the body in an inverse manner to the way that age related diseases like PD, AD and cancer increase with age. Its almost as if the body can't stay healthy without melatonin remaining at higher levels!
I wonder what would happen if melatonin levels in the body remained at levels seen in humans prior to puberty?
My confidence is a little shaken after swapping 2x 2.5mg lozenges for a 5mg capsule of a different brand (and went from great results to it being like I hadn't taken anything). Then I read this article just now:
Melatonin Natural Health Products and Supplements: Presence of Serotonin and Significant Variability of Melatonin Content - ncbi.nlm.nih.gov/pmc/articl...
I do notice that Dr. Ralph Golan mentions in his book, Optimal Wellness: "The synthetic form with no added brain tissue is recommended."
Solgar brand specifically states it is suitable for vegans, but I'm not seeing that on the lozenges or the capsules that I have. In fact the Solgar label lists, "Melatonin (as n-Acetly-5-Methoxytryptamine)" These are liquid and 10mg tablet.
eta: unfortunately his book does not have melatonin in the index, so I can't check what else he says about it
Before Marc had this setback, he had looked up melatonin supplements for me on a subscription supplement review service and they tested many melatonin supplements and found that with the exception of one supplement, they were all very close to what was stated on the label and the review was up to date.
To speak to your particular situation though and why you are seeing this variation in a 5 mg capsule compared to two - 2.5 mg lozenges, you have to remember that melatonin has poor bioavailability estimated as low as 3% up to 15%. Your lozenges are being at least partially absorbed sublingually which means you are likely getting at or above the 15% bioavailability from them whereas with the 5 mg capsule you are likely getting closer to the 3% level. To say that a little differently, you might be getting around 5 times more bioavailability of melatonin from your lozenges compared to your capsules! I hope this clears it up for you.
Sublingual delivery avoids degradation in the stomach as well as loss through "first pass". In other words you will be getting much more melatonin into your circulation.
I saw somewhere today that tablets can be cut up without any problem. Does that fit with your understanding? I have non-time release tablets that are 10mg; thinking to cut them in half or even quarters.
eta: hmmm... A better idea might be to grind one up and divide the resulting powder using a beam balance scale.
I was anxious to get some and the shelves were basically picked clean locally, except for one time-release tab. So I purchased a variety of brands and delivery types online, not knowing which one I would prefer.
Originally I was thinking of Dr. Mischley's general guidelines for PwP and thinking that I may be headed for 10mg (which is why I bought that Solgar 10mg).
Until I tried the 5mg capsule that one night, I hadn't appreciated just how much difference there could be between delivery method. I'm tempted to try opening another 5mg capsule and doing sublingual, just to see if it is delivery or brand... but I want to talk to someone more knowledgeable first. Maybe I'd wait until my sleep is more stable too.
Melatonin powder is a little bitter to use that way and there may be an ingredient in the lozenges that helps with sublingual absorption which the powder wouldn't have. In any case take notes and share your results on the forum.
Thanks! Yeah, I just wish that my new doctor didn't have to reschedule to next week. I'm desperate for a full night of sleep. All I need is like 2 hours more and it would be perfect, but adding another 2.5mg lozenge last night seems to have been too much (and didn't increase the time). I'll just go back to 2x 2.5mg and stay there until I can see her.
Try this tonight and see if it helps. Take one lozenge, 2 hours before bedtime. Take one more lozenge 1 hour before bedtime. Take the third lozenge at bedtime. Tell us tomorrow if it helped. I call this melatonin 123 and it helps me sometimes.
The melatonin 1,2,3 schedule was definitely an improvement, however I found it to be a real struggle to stay awake** for the last 45 minutes or so. Also, considering the fatigue that I'm feeling since increasing the dose and the way that I kept falling asleep yesterday, I'm suspecting that 3 lozenges may be too much. Neither of the nights with 3 lozenges saw improvement in time slept when compared to 2 lozenges, but there are too many variables being changed too quickly to make this a good test.
I may try a revised melatonin 1,2,3 and take one lozenge at 8:30pm and one at 9:00pm. Or possibly join Bolt_Upright in following the protocol from the study linked in the original post, especially since they found a gradual response over weeks (I probably increased to 2 lozenges too quickly).
**We've reduced lighting in the house 2 hours before bedtime, and no blue light (& no blue light filters) for 1 hour before. This alone makes me very sleepy at bedtime. I was originally taking 1mg liquid an hour before the 2x lozenges, but found it hard to stay awake for the last 20 minutes, so changed it to 1/2 hour before bed.
Yes, melatonin 123, I originally posted on the forum for people who were having a hard time getting to sleep and as you can see, it can be helpful for that purpose. With me, that super sleepy feeling usually comes on about 15 minutes before I want to go to bed, but with you, it hits you at 45 minutes. I guess that is partly due to different metabolism rates and partially due to the fact that your lozenges get into the blood quicker than capsules since they are at least partially absorbed sublingually. This is good to know and thank you very much for your feedback!
Art
I do extremely well on taking 1mg clonazepam prior to going to bed as prescribed by my neuro It has controlled my RBD for 10 years.
In Dr. Mischley's presentation** for the Parkinson's Foundation last year, she mentions:
"From the PPMI study, the following symptoms predicted faster PD progression: (KM Tsiouris, 2017)
- frequently disturbed sleep (REM sleep disorder)
- falling asleep while watching TV
- falling asleep as a car passenger"
What she fails to mention is that those are also classic signs of having untreated sleep apnea.
My HWP's restless legs became much worse after using melatonin for a year. Perhaps he was taking too much for his system 6mg time released at same time, but RLS became much worse. This can happen according to RLS Foundation.
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