Restless Legs Syndrome (RLS) Discussion Board

In addition to RLS, I have delayed phase sleep disorder (dspd). Basically, this is when your circadian rhythm runs value than normal. My natural sleep schedule is from 4am-11am.

Bright light therapy is used to advance one’s circadian rhythm. More specifically, long low level bright light. I was able to successfully move my sleep schedule from 4-11AM to 12-7AM; however, this greatly exacerbated my RLS. Some studies show that seems that bright light therapy significantly increases melatonin. I’m speculating that this is why my RLS is out of control right now.

Sharing in case someone else finds themselves in this predicament.

My schedule is delayed, also, and I'm not sure which came first, the RLS or the DSPD. Being that RLS is usually worst at night, I think some of learn to sleep when we are able. I also have narcolepsy, and can nap during the day. My RLS is seriously augmented from taking dopamine agonists years ago, and it's 24 hours. But it's definitely worse about midnight.

I also sleep best from about 4am to 10am but usually in two shifts with a 1 - 2 hour break. Sometimes I get an hour or so earlier. I have not been diagnosed with DSPD and have always considered it to be poor sleep/insomnia as a result of my RLS. My RLS is 24/7 and is at present controlled as best it has ever been but of course this in no way means I am symptom free.

SquirmingSusan wrote: ↑

Thu Sep 15, 2022 11:33 pm

My schedule is delayed, also, and I'm not sure which came first, the RLS or the DSPD. Being that RLS is usually worst at night, I think some of learn to sleep when we are able. I also have narcolepsy, and can nap during the day. My RLS is seriously augmented from taking dopamine agonists years ago, and it's 24 hours. But it's definitely worse about midnight.

I’m sorry to hear that? Have you tried coming down the DA?

I haven't taken a DA for many years. My RLS never returned to its baseline after taking those drugs.

SquirmingSusan wrote: ↑

Fri Sep 16, 2022 10:25 pm

I haven't taken a DA for many years. My RLS never returned to its baseline after taking those drugs.

Yes, my RLS is the same. DA’s made it worse and it never returned back to baseline.

Off topic, but I too never reverted to previous condition after augmenting even though have not taken DAs for 4 months. This is something that is not mentioned very often in the "official" medical literature.

Oozz wrote: ↑

Sat Sep 17, 2022 2:45 am

SquirmingSusan wrote: ↑

Fri Sep 16, 2022 10:25 pm

I haven't taken a DA for many years. My RLS never returned to its baseline after taking those drugs.

Yes, my RLS is the same. DA’s made it worse and it never returned back to baseline.

Dr.Placebo wrote:Off topic, but I too never reverted to previous condition after augmenting even though have not taken DAs for 4 months. This is something that is not mentioned very often in the "official" medical literature.

My augmentation from DAs was about 14 years ago now. I agree: despite what the literature claims, you do not necessarily return to your pre-DA baseline once you stop DAs; there is often long-term damage. It seems, from my personal experience, the damage is not necessarily permanent, but it sure seemed that way for many long years. In my case it took maybe 10 years before things started to improve. As to what factors influence the rate of improvement, I don't know. Diet and lifestyle factors might influence how long it takes to recover, so I wouldn't expect it to be the same for everyone.

Beth, that is comforting to hear that even after years, your baseline symptoms improved. Hopelessness about the future is one of the things I am struggling with, so hearing that one person at least had their augmented symptoms eventually improve helps me carry on. thank you.

BTW, regarding the original post, I just got my Luminette 3 glasses in the mail today! Too bad they were one day too late for Halloween--could have been part of a very cool costume!

Paul

oh great! let me know how they work. It'll take a few weeks I imagine. Are you using red at night?

I've returned to putting my green-light goggles on in the mornings because my circadian phase has started to slide again. Maybe because it's winter (sun rises after 9 AM now, soon it will be after 10 AM). But I'm onlyh keeping them on for 15 or 20 minutes. The first winter, I kept them on for an hour (horrible).