Restless Legs Syndrome (RLS) Discussion Board

So I've lived with a non-24 hour circadian rhythm disorder for 20 years now , since age 24

Prior to that , it was a delayed sleep phase circadian rhythm disorder from age 15-24 .... and I really wish I could go back to this one .

Non24 is likely a bigger contributor to my lower quality of life than my RLS
In fact, it definitely is

Other than melatonin, or a melatonin agonist , the only therapy is light therapy

I have the goLite blue light box
I have given it a good try for a consistent month or two before

I did find it was quite effective for treating seasonal affective disorder
It still could not correct my rhythm.

I could do everything at the same time to establish a routine including obviously getting up at the same time and using the light box, but eventually I just could not fall asleep at the same time .


Do you have a circadian rhythm disorder ?

How do you remain integrated with the real world ?

What do you do to "treat" it ?

Melatonin worked for me for a while but at some point it started triggering RLS symptoms and I had to stop.

Now my treatment option is Cannabis. Most of the time I am able to fall asleep without feeling super tired.

Cannabis is not a perfect solution but it still by far the best solution available.

For as long as I can remember, I have never wanted to go to bed with everyone else. My body seems to have a longer clock. But, have never been diagnosed. I can remember - during college - going out with everyone to a bar, coming home at 3 AM, then staying up until 5 AM to read. My roommates thought I was crazy.

For awhile, I let myself sleep when I wanted/could. I always had a longer 'day' than 24 hours. My days ranged from 25-30 hours long. I couldn't have worked during that time. But, I really don't know how much the RLS medication affects this, but am sure it does to some extent. Wish I had paid more attention before.

I also have SAD. MUCH better now that I am living in So Cal than the Midwest US. I have sunshine most every day and I work at home looking out a window.

I teach - am an online professor. I work whenever I want to. I have no idea how I could work a typical job.

Same here, I always felt that a 26h day would be ideal for me. This has changed a bit with a regime of 5-HTP (high dose of 400mg) and 2mg Melatonin roughly 2h before bedtime, and a teaspoon of GABA powder (pure) about 30min before bedtime.

Frunobulax wrote:Same here, I always felt that a 26h day would be ideal for me. This has changed a bit with a regime of 5-HTP (high dose of 400mg) and 2mg Melatonin roughly 2h before bedtime, and a teaspoon of GABA powder (pure) about 30min before bedtime.

Are you now able to live a 24 hour day consistently ?

Melatonin doesn't make your rls worse ??

The 5-htp or Gaba powder doesnt conflict with any of your Rls meds ?

ViewsAskew wrote:For as long as I can remember, I have never wanted to go to bed with everyone else. My body seems to have a longer clock. But, have never been diagnosed. I can remember - during college - going out with everyone to a bar, coming home at 3 AM, then staying up until 5 AM to read. My roommates thought I was crazy.

For awhile, I let myself sleep when I wanted/could. I always had a longer 'day' than 24 hours. My days ranged from 25-30 hours long. I couldn't have worked during that time. But, I really don't know how much the RLS medication affects this, but am sure it does to some extent. Wish I had paid more attention before.

I also have SAD. MUCH better now that I am living in So Cal than the Midwest US. I have sunshine most every day and I work at home looking out a window.

I teach - am an online professor. I work whenever I want to. I have no idea how I could work a typical job.

I have SAD , which is likely much worse in an Ottawa winter than So Cal
Really tough to keep a steady sleep pattern in winter or summer with 930pm sunsets and 5am sunrises


So you've successfully lived your entire adult life with a floating non24 hour circadian rhythm disorder ?

Have you decided that you're going to live the rest of your life like this ?

I played online poker and played live in 24hour casinos for quite a while for money (contrary to my sleep therapists suggestion)

I forgot if you have an children .... I guess not?

I've always tried to make the best of my life socially and financially over the last 20 years , but now that I have kids , routine is just so so so imperative

I'd like to talk to you about this a bit more in depth
( and also how you continue to successfully take mirapex after augmentation, but one thing at a time I suppose)

I have been lucky in so many ways. I worked as a consultant for over 20 years - which allowed me to work at home most of the time. I also appear to have had a much better memory than I ever gave myself credit for - although I often had only a few hours sleep, I could remember and function. In my late 30 to early 40s that hit a wall. I also found that working at home helped tremendously when I lived in Chicago. And, now I am a professor, so again, I set my own hours. I do not think I could do this any other way.

I had step-kids - they were older - but it was darn hard! I remember feeling that there was not a second of my life that was mine or that I could use to sleep or feel rested. But, that was more the PLMD and the sleep issues, I imagine.

I am in my late 50s now...I kids are long gone and it's just me and hubby. The augmentation changed my life SO much more than anything else. The last 15 years has been just trying to get back to some sense of normalcy.

Although my experience with circadian rhythm is a bit different, maybe you will see something of relevance to your situation.

For a large part of my 35 yr career, I was involved in frequent international travel. Near the end, I was on an overseas airline flight two weekends out of each month. I finally got to point where even 12 hr time shifts were fairly easy to adjust to. In those days, my RLS would cause issues during the flights (usually at meal time when I was "trapped" in my seat), but in general my RLS was mild to moderate. Looking back, I can see that I was able to adjust to the time shifts and jet lag much more easily than my associates. I thought that this was simply due to the fact that I traveled more frequently and so was more tolerant. But now I think that this was a sort of benefit from the RLS in that I could function while fatigued and could extend my circadian day to match whatever time zone I was in. My experience was always that long days (36 to 48 hrs) were easier to adjust to than short ones (18 hrs).

It wasn't until about 4 months after I retired and stopped frequent international travel that my RLS became severe. There is no way of knowing, but my theory is that my RLS was sort of held in check by my chronic jet lag and only after I caught up on sleep and re-established a normal circadian rhythm that my RLS exposed itself for what it is today. If only it weren't so expensive, it would be nice to push my RLS back to the old moderate level by hopping on a plane several weekends each month (not to mention getting to go someplace nice now instead of the places that I frequently had to visit).

I flew a few times to the U.S. and even to Hawaii and I noticed that when flying west and the days got longer, my RLS was always dramatically improved for the first 6 to 8 days and only then I got back to baseline. I always loved how easy it was to sleep in the first few days.

It feels like that staying up long is almost a natural remedy against more severe RLS symptoms.

I blamed myself so much for staying up long and not going to bed but the more I learn about those issues, the better I understand that I am simply wired this way and that a normal way of living might be out of reach for me

Icantsleep wrote:

Frunobulax wrote:Same here, I always felt that a 26h day would be ideal for me. This has changed a bit with a regime of 5-HTP (high dose of 400mg) and 2mg Melatonin roughly 2h before bedtime, and a teaspoon of GABA powder (pure) about 30min before bedtime.

Are you now able to live a 24 hour day consistently ?
Melatonin doesn't make your rls worse ??
The 5-htp or Gaba powder doesnt conflict with any of your Rls meds ?

No, that's all fine. If your RLS is not under control then anything that makes you tired might elevate RLS symptoms, but my RLS is fine most days.

5-HTP and Gaba aim to increase serotonin and melatonin, while RLS drugs usually affect dopamine. If anything they helped me to control RLS symptoms better.

Frunobulax wrote:

Icantsleep wrote:

Frunobulax wrote:Same here, I always felt that a 26h day would be ideal for me. This has changed a bit with a regime of 5-HTP (high dose of 400mg) and 2mg Melatonin roughly 2h before bedtime, and a teaspoon of GABA powder (pure) about 30min before bedtime.

Are you now able to live a 24 hour day consistently ?
Melatonin doesn't make your rls worse ??
The 5-htp or Gaba powder doesnt conflict with any of your Rls meds ?

No, that's all fine. If your RLS is not under control then anything that makes you tired might elevate RLS symptoms, but my RLS is fine most days.

5-HTP and Gaba aim to increase serotonin and melatonin, while RLS drugs usually affect dopamine. If anything they helped me to control RLS symptoms better.

I dont mean to nag , but are you able to keep a 24 hour pattern with the aid of this regime?

Icantsleep wrote:
I dont mean to nag , but are you able to keep a 24 hour pattern with the aid of this regime?

No worries
Yes, I am. There are some nights where I sleep late, but they have been more sparse. On most nights I get up around 6:30am to 7am and I go to sleep between 11pm and midnight.

I forgot to add that I switched to a ketogenic diet, which has resolved a number of health issues for me. I do believe that gut bacteria are a vital part of the endocrine system, and they need to be nursed in order to get your neurotransmitter (including melatonin and serotonin) in order.

Frunobulax wrote:

Icantsleep wrote:
I dont mean to nag , but are you able to keep a 24 hour pattern with the aid of this regime?

No worries
Yes, I am. There are some nights where I sleep late, but they have been more sparse. On most nights I get up around 6:30am to 7am and I go to sleep between 11pm and midnight.

I forgot to add that I switched to a ketogenic diet, which has resolved a number of health issues for me. I do believe that gut bacteria are a vital part of the endocrine system, and they need to be nursed in order to get your neurotransmitter (including melatonin and serotonin) in order.

Wow

That's outstanding

I agree with gut health
Mine is so out of whack

I have adverse effects from tramadol, and how it treats my gut is my biggest concern
I'm pretty sure my gut was already very sensitive

I've been trying different things with diet but nothing consistent
Eliminating dairy and processed meats / obviously sugar etc
Also eating yogurt

I really want my gut to get better

Icantsleep wrote: I really want my gut to get better

If you want to focus on your gut, Steven Gundrys "Longvity Paradox" would be a good place to start