@melwar Hi melwar,

Since my RLS symptoms felt like a muscular problem (an aching feeling that is painful) and not like the typical descriptions of RLS I read online (which I had dismissed as not relevant) it was 10 or 11 years before I had a diagnosis.

I kept returning to physical therapy and wondering what I "did" during the daytime that made some nights so unbearable. I'm a cause-and-effect thinker and it drove me batty not being about to pin down anything behavioral that would give me a sense of control.

Consequently, having the correct diagnosis was a big step forward for me.

On the other hand, this crazy "jump through the hoops" of trying all these ineffective medications delayed any real progress in obtaining successful treatment another couple of years. It's the way medicine operates now. Doctors need to go up a ladder of treatments, often to satisfy insurance, and this has become part of their mind-set.

What I tell myself now is that I do cycle out of "bad" phases--even if I don't understand their exact "cause." My doctor, also, has reminded me that it is a "brain thing" and brains are complicated. I swear I don't feel stressed etc, but whatever happens in my brain may not be something I recognize consciously.

There are great RLS doctors and the Foundation website is certainly the place to find one. You have taken a smart approach. Unfortunately, this doesn't totally protect (any of us) from experiencing some very discouraging up's and down's.

Now, that I have (finally) effective treatment, I think I am even less tolerant of any bad spells. I've experienced reasonably good sleep and I never want to go back to hell-ish nights and insomnia etc etc. ....The knowing that sleep deprivation is worst than death--such a scary realization to face.

Despite having (up to my eyeballs) help from sleep psychologists (plural) and accepting the importance of good sleep hygiene, one thing that helped me was ignoring the advice not to read in bed.

I needed to re-set my unconscious-thinking from "bed is a horrible, scary place" to its something comforting and enjoyable. Reading--in bed-- before I go to sleep-- makes going to bed something I look forward to instead of dreading.

Also, despite advice not to be "hot" in bed (which interferes with sleep cycles), I have an electric blanket that I use to warm the space in advance. I turn it off as soon as I get into bed, but I avoid that brrrr cold sheets sensation. When I slip into bed each night, it is a feeling of ahhhhh and then I open my Kindle.... : )

I reprogramed myself to love getting into bed at night. ...A miracle in itself, when I think where I was coming from.

I'm not suggesting these simple things can solve the problems you are now having, but my RLS (psychologically) caused me to be fearful of bedtime. The more I was afraid, the more I was stuck being unsuccessful getting sleep--the more I became physically tense, which fed into the RLS symptoms coming on. Part of breaking the cycle (for me) was creating a sense that going to bed was comforting.

I find that (for me) sleeping better (which means RLS is less severe and less frequent) begets sleeping better AND sleeping badly begets worse nights.

It's also possible that you need a little more medication. Both doctors and patients want to keep dosage at a minimum. But, I think it's possible that sometimes this can result in an under-dosage. I was stuck on this in the past--like taking the least amount was virtuous. My dose was increased last year and I think, overall, that was good. I still have "bad spells" and don't want to increase the dose more each time that this happens... But, overall, I think increasing my dose was appropriate.

I see you are taking methadone. Maybe, a switch to buprenorphine (a similar, but in my doctor's thinking, a superior drug) would be helpful. Maybe, your current situation needs a change of approach from the doctor--something he (or she) needs to address--not something you can impact by yourself.

I was having a problem with RLS coming on in the early morning--before my usual waking time. I mentioned to my doctor (off-handedly, I never thought to consult him about it) and he suggested I took my medication too early and to take it later (which has helped). My point is I should have asked for his help, but I have this mentality that part of RLS is just needing to endure it--that there aren't answers and all the doctor does is write a prescription. This mentality is counterproductive. A good RLS doctor (like you have at Mayo) should work with you, beyond prescribing medication.

Augmentation--that's a different story and nothing I understand personally. I wish you the best, if this is what you are experiencing.

I have wondered about any limitations of Nidra. No one ever told me not to use it under specific conditions. I was told if it didn't work to set it at a higher number. My RLS symptoms can "build" (intensify and worsen) over about a minute. So, I have time to turn it on before my symptoms are at their worst. ALSO, I have used a large, double headed massager on my legs (mostly the left) since I first developed symptoms (believing these were muscular) and I use this, still, in conjunction with the Nidra.

My theory (not entirely embraced by my RLS doctor's terminology, who BTW walks on water and has had the far end of education on the subject) is that "other messages" to the brain disrupts the RLS signals to my legs. Things like walking, or using the massager, or the Nidra can over-ride the RLS signals. At the height of my worst RLS (before taking medication), the massager ceased to be effective--but now it is a helpful adjunct to the Nidra. I use it for the first couple minutes the Nidra is on, then I put it down and go right back to sleep (as the Nidra continues to run). Also, RLS makes the muscles in my legs contract--get very tight. The massager loosens my muscles and I think that helps. So, the massager (in my theory) is a distraction to the nerves carrying RLS messages, while it also loosens my muscles--Tight muscles (for me) seems to feed into perpetuating RLS symptoms during an episode.

My RLS care is a three prong approach: effective medication is absolutely necessary; acknowledging and addressing the psychological piece by making bedtime pleasant, in my own way, for myself; and the Nidra being able to stop RLS after it begins. None of these things would be effective in isolation. I need all three, working together--each effective in its contribution.

I hope sharing these things with you, melwar, tells you that I understand and that you are not in this alone. My answers may not be your answers, but I still think we learn from each other.

Everyone reading this forum understands and is pulling for you. Please continue to tell us how you are doing--if something new is tried--how you are coping.