Melatonin added to the mix

[ViewsAskew]

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.

Yes. .5 mg. I couldn't find lower than 2 mg when I looked - which confirmed what the doctor I read about had said. It's hard to find smaller doses, yet they aren't helpful.

It helps me STAY asleep and FALL asleep. While the movements can (and do) wake me up, I am not awake for other reasons any longer.

[badnights]

Me too, it helps me fall asleep and Stay asleep. Not perfectly but it does.

I had always understood that melatonin could aggravate symptoms (as per my previous) post.

There is a paper in a book I have that discusses the coincidence of melatonin levels rising right around the same time that WED/RLS symptoms get bad, and the paper speculates that possibly melatonin is involved in causing the symptoms. That's why I never tried it either. But even then I wondered if the authors were confusing coincidence and causation.

Of course melatonin rises at night, it's trying to put us to sleep, that's its job. And WED/RLS happens at night because something in the complex circadian systems of our bodies is messed up. Not because melatonin is doing its thing. I wish I hadn't let that paper scare me away from trying it.

[legsbestill]

Thanks very much for this. It's really interesting to hear about the small dose being so effective. Also about the importance of the lights. I am truly delighted to read of the benefits for you, Beth. When I first found this forum in 2016, you were in one of your circadian rhythm sliding phases and I remember thinking how awful it sounded. You are such a stalwart for so many on here, it's great to hear of things working out for you.

[stjohnh]

...

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...

Beth,
In addition to my RLS, I have Advance Phase Sleep Disorder. It only seriously bothered me 20 years ago or so, treated with lots of BRIGHT lights in the evening. I have been having symptoms again (going to sleep for the night at 5-7pm and waking up very early). And a week or so ago I started light therapy again. You may want to investigate Delayed Phase Sleep Syndrome (not being able to go to sleep until very late and waking up late in the morning-treated with BRIGHT lights in the morning). It is possible that may be a contributing factor.

[ViewsAskew]

...

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...

Beth,
In addition to my RLS, I have Advance Phase Sleep Disorder. It only seriously bothered me 20 years ago or so, treated with lots of BRIGHT lights in the evening. I have been having symptoms again (going to sleep for the night at 5-7pm and waking up very early). And a week or so ago I started light therapy again. You may want to investigate Delayed Phase Sleep Syndrome (not being able to go to sleep until very late and waking up late in the morning-treated with BRIGHT lights in the morning). It is possible that may be a contributing factor.

Beth and I have talked about this several times. We both have thought this might be true. Now I am not so sure. In the past, I tried lights, I tried moving my schedule forward until I was back at 10 PM, etc. None of it helped. That melatonin is working seems crazy to me - the years I spent fighting this! I could almost work full time again related to my sleep (as long as the WED/RLS stays under control).

[TimG]

Melatonin is part of the sleep picture for me. I took Ambien for a long time and found that it was not helping me get to sleep and causing a drug hangover in the morning. I had tried melatonin unsuccessfully a few times in the past, but read in a book Sleep Through Insomnia, by sleep physician Brandon Peters that a small dose of melatonin is sometimes more helpful than a large dose. I found that Sundown manufactures a 300 mcg tablet that works well. I also found a liquid melatonin manufactured by The Vitamin Shoppe where 1 dropper is about 300 mcg. I also used light therapy every morning using Luminette light goggles. That has helped normalize my circadian rhythm.

On another note, while I do not need pramipexole (0.125 mg) every night, I've found in recent months that I was using it more often. Sure enough, my ferritin level, which had been staying around 100 had dropped to 60. I've now been taking a higher iron dose, which should bring levels up.

[badnights]

legsbestill, thank you for the kind words! It has been - and still is - an adventure, that's for sure.

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.

How did the appointment go? If s/he didn't prescribe lights, you should try them on your own anyway. And I agree that the melatonin is probably worth another try.

In addition to my RLS, I have Advance Phase Sleep Disorder. It only seriously bothered me 20 years ago or so, treated with lots of BRIGHT lights in the evening. I have been having symptoms again (going to sleep for the night at 5-7pm and waking up very early). And a week or so ago I started light therapy again. You may want to investigate Delayed Phase Sleep Syndrome (not being able to go to sleep until very late and waking up late in the morning-treated with BRIGHT lights in the morning). It is possible that may be a contributing factor.

The lights are amazing. I'm happy to hear you could get away from them for a while. I mean, it sucks you have to use them again now, but it's good for me to think that using them is not going to be required of me every single day of my life.

I did think of DSPD - in fact, I told my doctor what was happening and said I wanted to call it medication-induced DSPD. But it actually really does slide, too. And there's no name for the way it slides. People with non-24hr will slide a few hours a day. The least they slide seems to be about a half hour a day. My slide is miniscule compared to that! But still disruptive. And it was a constant struggle to keep the slide as slow as it was. To be honest, it's still a struggle, but not as hard, and I might still be sliding, but even slower than before.

Since the only treatment for any of them - DSPD, non-24, ASPD - - is lights, I guess it doesn't really matter what it's called. (just don't mix up your lights for ASP and DSP!).

It really helped (and this is another thing I've talked about with Ann) - it helped for me to mentally separate the sliding sleep-phase issue from the WED/RLS issue. Suddenly, there was something I could do about it - melatonin and lights. Crazy how well it works.

Update: I don't seem to need the morning goggles anymore. Maybe because it's the time of year when the sun doesn't really set here. I step outside when I get up and get a blast of sunlight. But I can always start wearing the morning goggles again if I have to.

I found that Sundown manufactures a 300 mcg tablet that works well. I also found a liquid melatonin manufactured by The Vitamin Shoppe where 1 dropper is about 300 mcg. I also used light therapy every morning using Luminette light goggles. That has helped normalize my circadian rhythm.

TimG I don't know if 0.3 mg would be enough for me. I think Ann uses microgram doses too? Everyone is different. They sell pills as large as 30 mg, which seems crazy-big to me. I started at 3 mg, that was too much, now I use 1.5. I could probably use 1.

I chose the ReTimer goggles instead of Luminettes because apparently our eyes become less sensitive to blue as we get older, and green has the same wake-up effect.

Sure enough, my ferritin level, which had been staying around 100 had dropped to 60. I've now been taking a higher iron dose, which should bring levels up.

Good for you! If you're that low, maybe you can get an infusion?

[peanut1]

Melatonin makes my RLS worse so that is not an option for me

[Dr.Placebo]

Beth (badnights), I am very interested in your light therapy and low dose melatonin. In fact I am interested in anything that works without drugs. Question: what about your bathroom and getting ready for bed, brushing teeth, etc.? do you have red bulbs in the bathroom or just at your bedside table? And your spouse? Red bulb at their bedside too?
Paul

[badnights]

Hi Paul
I have two red-lights lamps in my living room, two red lights in clamp-sockets in my kitchen, one in my office, one in my bedroom, and one in the bathroom. And I swapped out the white bulbs for red ones in two hallways. So when 9 PM comes (or 8 PM, I'm experimenting with different times), I go around the house turning off all the white lights and turning on red ones. When I get up in the middle of the night, I use only the red lights.

I don't have a spouse or anyone else in the house, so I don't have that problem - - if I did, I would have to ask my spouse to also use red lights, or to isolate behind a closed door. Apparently even a brief flash of white light can re-set your clock. But I don't imagine a spouse would take easily to the red lights. I couldn't even do it for myself, the first time I tried. Only the second time was my determination/desperation enough.

I seem to be fine without the Re-Timers (green-light goggles) in the mornings.

Since I started meditating and brain re-training (Gupta Program for CFS, I'm trying it for WED/RLS) I seem to have conquered the delayed sleep-phase disorder/non-24 hr. thing.

But sadly, I have not managed to reduce my medication yet (not permanently, anyway).

[Frunobulax]

Beth (badnights), I am very interested in your light therapy and low dose melatonin. In fact I am interested in anything that works without drugs.

I use a blue light filter instead of red light sources (available as clip-on for people who need glasses like me). It's not a game changer, but it seems to help a bit.

[Dr.Placebo]

Thanks for the reply, Beth. I do have a spouse, but I might at least be able to work it so when I get up in the middle of the night I only see red light. I currently use a headlamp with a red setting but it is very weak.

I did recently start using Luminette 3 glasses (blue-enhanced white light) in the morning. I don't have a circadian rhythm disorder (I don't think) but I am trying to reduce my Seasonal Affective Disorder and depression and improve my sleep.

[badnights]

Thanks for the reply, Beth. I do have a spouse, but I might at least be able to work it so when I get up in the middle of the night I only see red light. I currently use a headlamp with a red setting but it is very weak.

I did recently start using Luminette 3 glasses (blue-enhanced white light) in the morning. I don't have a circadian rhythm disorder (I don't think) but I am trying to reduce my Seasonal Affective Disorder and depression and improve my sleep.

Doing that much should help. I can't stand trying to read in dull red light, so if I were you I would ditch the headlamp and replace it with something else if you're trying to use it for reading. I also have a pair of amber goggles that I love. I forget where I got them and iirc they were kind of expensive (maybe $50?) for all that they're just a pair of wrap-around sunglasses, basically but they work well, & can fit regular glasses underneath .

I use a blue light filter instead of red light sources (available as clip-on for people who need glasses like me). It's not a game changer, but it seems to help a bit.

The amber goggles might be a good thing for you. At least they would stop whatever is leaking in from the sides of your glasses. But it sounds like the clip-on filters are helping enough.

[Frunobulax]

The amber goggles might be a good thing for you. At least they would stop whatever is leaking in from the sides of your glasses. But it sounds like the clip-on filters are helping enough.

Considering that I can barely distinguish black and white without glasses (-8 dioptres), clip-ons is the best I can do

[rvjimzhr1]

I've just been reading these older posts re: Melatonin and find new and interesting info! My experience with Melatonin is from years back and it didn't seem to help with my sleep issues. I deal with refractory RLS and am have been on Gabapentin for 5 years. It is somewhat effective but I also have nightly insomnia and nothing seems to help.

I'm curious if those of you who have reported success with smaller doses are still having good results with no worsening of RLS. Where are you finding lower dose tabs? I just checked Costco and see nothing but 5mg dose.

I appreciate your comments.

Jim