Restless Legs Syndrome (RLS) Discussion Board

I've recently started using melatonin. The first night was insane. I took it 2 hr before I expected to go to bed, but after 1 hr, I was too sleepy to stay up. I had taken no zopiclone, yet I slept like a log most of the night. It hasn't been that good since but still pretty good, for about a week, but I have been getting very sleepy during the day. I simply couldn't stay awake. (I also couldn't sleep much of the time, since I would have WED/RLS symptoms, so it was not simply a matter of letting myself catch up on lost sleep.) Last night I didn't take melatonin and today I had more energy.

That's not enough data to conclude anything, because my energy levels, sleepiness, and mood are very variable even when I'm not adding and subtracting medications.

Does anyone get melatonin hangover consisting of extra sleepiness the next day?

I've been interested in trying melatonin. It is a prescription drug in New Zealand, I'll ask my GP on the next visit.

It is my understanding that Melatonin is not generally recommended for use when suffering with RLS.
That RLS could be worsened by melatonin as it can tensify RLS symptoms because it lowers the amount of dopamine in the brain.
However, we all know how perverse some reactions to certain drugs may be.

Thanks, Betty. I'll reconsider.

Try the lowest dose of melatonin.

I take 5 mg, but know someone who takes 0.5 mg or they become a zombie.

Variable results with RLS. Doesn't impact me.

I started taking it about a month ago. only 50 mcg. Really effective for me. Not tired the next day.

Oh ya, I forgot to tell my dose. I was using 3 mg. Last two nights I've split that in half. No daytime hangover yet.

It is my understanding that Melatonin is not generally recommended for use when suffering with RLS.
That RLS could be worsened by melatonin as it can intensify RLS symptoms

I avoided it for years because there is an association between higher melatonin levels and increased WED symptoms - but fully aware that it was unknown which was the chicken and which the egg. I think partly I avoided it because I didn't think it could be important (I'm not as logical as I think I am!). I decided to try it because QyX pointed me to some research on tryptophan deficiency, and tryptophan is needed to manufacture melatonin. And my doctor recommended it (again) at about the same time.

My son told me he took it once and was dead sleepy for the next 30 hours. So he never touched it again. He didn't remember the dose. I told him to consider trying it again at 1 mg if he could find it. Ann, where do you get it in microgram sizes? online?

Having seen the posts of Ann, Beth and Xenman it shows that Melatonin is worth trying despite it having a n association with worsened RLS symptoms. Indeed, I may make a trip to the pharmacy today. Bearing in mind to try the lowest dose first.

Low dose is HARD to find. On Amazon, it was 5 mg, 10 mg, etc! I finally found 1 mg there.

But, random chance, I found 500 mcg at Trader Joe's! You don't have any, Beth, unfortunately. I snapped the 1 mg in half prior to finding the ones at TJs.

Now...it's about a month or so after starting. I also am close to a year out on my last infusion and 4 months ago my ferritin was already in a range that I could have had an infusion. Because of COVID-19, I haven't done it. We moved this week - which is VERY stressful. And, twice last week and three times this week, I've had symptoms. Not bad, but enough to either keep me up for an hour or so past the time I'd usually go to bed, or to awaken me before I have had enough sleep.

No way to know which it is (or if it is ALL). I will keep taking the melatonin for now. My guess is that it's the ferritin, followed by the stress.

EDIT changed 500 mg at Trader Joe's to 500 mcg at Trader Joe's

. My guess is that it's the ferritin, followed by the stress.

definitely the most likely from what I know. Time to brave public places for an infusion!

Just want to confirm the effects and expand on what I;ve already mentioned.

I took zopiclone for over 10 years. (Zopicloine is similar to Ambien.) At that point, over 10 years ago when I started, I had been on hydromorphone for a few months and my WED/RLS was finally treated, but I still couldn't sleep. I wasn't being tortured, so that was an improvement, but I was still sleep-deprived, non-productive at work, and without any form of social life. I was desperate when I asked for it. When you can't sleep, and that's slowly eroding your life, you will do anything to get some sleep.

For a few years, I was convinced that zopicline had no side effects (except sometimes I would do things in the middle of the night and not remember). I knew my brain was foggy, but I couldn't tell what was causing it.

At some point I started modafinil, the alerting pill, because I was still exhausted all day. I was not getting a good sleep with the zopiclone - but it was better than nothing! So I took modafinil every morning.

I worried about the zopiclone increasingly as my mother declined from Alzheimer's. Surely this pill must be messing with my brain! I tried to replace it with a number of things, including various types of marijuana, but what finally worked was melatonin.

I was able to stop both zopiclone and modafinil by:
- taking melatonin at night,
- a strict bedtime routine of turning off the overhead lights and turning on red-bulb lamps instead; plus all my screen devices have f.lux installed to automatically remove blue & green tones in the evening, and
- in the mornings, putting on green-light goggles (made by Re-Timer. There are also blue-light Luminettes and other companies now make similar products).

The effect was so dramatic, I have to wonder if I was producing any melatonin at all on my own.

More: a clarity of thought has returned to me. I helped change a motorcycle tire and I knew it was sticking in my brain, whereas the last tire change I helped with, in 2019, I remember nothing of. And I've had other welcome indications that some of my brain is back. I feel sharper.

Dosing: this is critical. Melatonin comes in a wide range of pill sizes, from under 1 mg to 30 mg, maybe more. I bought the smallest I could find locally, 3 mg, and that was too much, so now I cut them in two. That amount seems to work for me. Someone else uses 1 mg and an hour later, 0.5 mg. You might have to experiment a bit. Sometimes I go up to 2 mg, with the last 0.5 an hour after the first dose, but when I start to feel too sleepy in the daytime, I cut back to 1.5 again.

For me, melatonin doesn't work as well without the red-light-at-night routine. That makes sense, because the idea is to stop blue light at night from activating the brain, to allow the melatonin to convince the brain it's time to sleep.

I don't know how important the green/blue light in morning is. When my mother was dying, I often skipped the green lights, and seemed to fall asleep ok at night, but too much was different for me to be sure. I have noticed at other times that if I skipped the morning green, I didn't get tired that night. But that is not consistently true.

More benefits: all these years I thought it was the hydromorphone preventing orgasms (libido was fine, but couldn't get to the peak), but it was the modafinil.

Final Benefit: My circadian schedule has stopped sliding. I can't tell you how huge this is. I have been losing a battle with medication-induced sliding daytimes since I started hydromorphone in 2010. "Sliding daytimes" might qualify as Non-24-hour Circadian Disorder. My bedtime and up-time slide at a very slow rate, 1-2 hours per year, unlike people with "natural" non-24, who slide 2-3 hours a day. By 2017, I was getting up at 6 PM. I started a job where I had to be up at 6 AM, and after 5 days of increased medication, my body flipped to a normal schedule. Then began more years of sliding, til I started the melatonin/red-light/green-light routine. The sliding has stopped !!

I can't get over my brain returning and how I wasted 10 years of my life and maybe have done irreparable damage to my brain, just because I didn't try melatonin back then. So I recommend to anyone struggling with WED/RLS insomnia (after the sensory & movement symptoms are treated) to try melatonin and light therapy. I hate the regimentation, but I love how I'm staying on a "normal" schedule and have my brain back.

Wow. That is incredible.

I have had a much less dramatic experience by taking even smaller amounts of melatonin. I, also, have stopped the sliding (and, like you, it went on for over ten years). When I have to increase my methadone dose, not sure that will be the case, but so far I am keeping it low-ish with the pramipexole.

I routinely go to bed by midnight and am up between 7:30 and 9:30, depending on how well/badly I sleep. I break a 2 mg tablet into 4 pieces and that is all it takes to make me tired within about 45 to 60 minutes after I take it. I often still stay up a bit, finishing things, but by the 90 minute mark, I cannot keep my eyes open.

I am beyond grateful I started this. I cannot imagine how much better it might be with the red light.

Beth, thanks for all the details. I have an appointment with an insomnia specialist in 10 days and expect to start on a similar journey. I have had terrible issues with insomnia and poor quality sleep ever since I was improperly send to the behavioral health hospital (aka psyc prison) eighteen months ago. Like you, may day has been slipping to the point where I have difficulty interacting with anyone before noon now and am sleepy until about 7PM each evening. I expect that the doctor will prescribe a form of light therapy to help me shift back toward "normal" hours. As for melatonin, I tried it a number of years ago and it didn't do anything, one way or the other. But that was in the early days of my severe RLS journey, so it is something to consider in the future.

Rustsmith wrote: ↑

Mon Jun 07, 2021 5:07 am

Beth, thanks for all the details. I have an appointment with an insomnia specialist in 10 days and expect to start on a similar journey. I have had terrible issues with insomnia and poor quality sleep ever since I was improperly send to the behavioral health hospital (aka psyc prison) eighteen months ago. Like you, may day has been slipping to the point where I have difficulty interacting with anyone before noon now and am sleepy until about 7PM each evening. I expect that the doctor will prescribe a form of light therapy to help me shift back toward "normal" hours. As for melatonin, I tried it a number of years ago and it didn't do anything, one way or the other. But that was in the early days of my severe RLS journey, so it is something to consider in the future.

I know I had tried it earlier and it wasn't successful, BUT! I remember that it was a MUCH larger dose (like 10 mg) and that it gave me horrible dreams). When I read that a doc suggested to take a half of a 1 mg tablet, I decided to try it again. Completely different experience.

It's wonderful to hear that melatonin has proved so successful. I had always understood that melatonin could aggravate symptoms (as per my previous) post. Perhaps 'could ' being the operative word and clearly we should never rule anything out.
I take note of Views dosage of 2mg divided into 4 pieces.
Ann - Do you mean that you are.taking a single dose of 0.5mg each night.
My difficulty is not so much falling asleep as staying asleep but I am surely happy to try the melatonin.