legsbestill, thank you for the kind words! It has been - and still is - an adventure, that's for sure.
steve wrote: 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.
Holland wrote: 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.
TimG wrote: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.
TimG wrote: 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?