RLS and other sleep disorders

[peanut1]

There are times I can somehow get the RLS to calm down and I'm still wide awake as if I took an amphetamine. I always thought this was part of the RLS, but my doctor (william ondo, RLS quality specialist) is saying this is something else and was honest enough to say he didn't know what it was. Whatever this is, I'm wondering if it's exacerbating the RLS. And how would I go about figuring it out? Not sure.

[Rustsmith]

Excellent question about how to figure that out. Unfortunately, I have no ideas, especially if Dr Ondo is at a loss since he would be more likely to know than any of us.
And I have the same issue at times. I will go to bed and immediately know that this will be another sleepless night. Often my legs are not that bad, but somehow I know that I will be up all night.

[peanut1]

Steve,

"Often my legs are not that bad, but somehow I know that I will be up all night."

That is interesting. I wonder if most of us have some sort of secondary condition that kicked the RLS into severe mode OR is exacerbating it at the very least. I wonder if this secondary condition of mine be why I can't take the methadone. I also know that sometimes too much iron aggravates the RLS and not enough makes it go nuts too. Makes me wonder if there could be could be a GI/gut issue. I look forward to talking to Dr. Ondo about these questions next month. I've also thought of going to a functional medicine doctor to help me answer that question, but am not sure if I want to take that road yet. It is an expensive road to go down.

[Rustsmith]

I have tried to convince my doctor to do some testing because I feel that there are things that are somewhat associated with my RLS that deviate from the normal symptoms. I haven't been able to persuade her yet, but may have made some progress last week. I had a bad reaction to an oral nail fungus med that caused symptoms that were strikingly like RLS (severe insomnia to the tune of 12 yrs sleep over 4 days and a constant need to move). However, it was strange in that none of my normal work-arounds (like soaking in hot water or walking the neighborhood late at night) did anything to my need to move. That has never happened before, not during augmentation nor during opioid withdrawal when my RLS was untreated. I am hoping that she is beginning to get an idea of what I was talking about when I last broached the subject.

[ViewsAskew]

I have tried to convince my doctor to do some testing because I feel that there are things that are somewhat associated with my RLS that deviate from the normal symptoms. I haven't been able to persuade her yet, but may have made some progress last week. I had a bad reaction to an oral nail fungus med that caused symptoms that were strikingly like RLS (severe insomnia to the tune of 12 yrs sleep over 4 days and a constant need to move). However, it was strange in that none of my normal work-arounds (like soaking in hot water or walking the neighborhood late at night) did anything to my need to move. That has never happened before, not during augmentation nor during opioid withdrawal when my RLS was untreated. I am hoping that she is beginning to get an idea of what I was talking about when I last broached the subject.

Oh, my! What do you think it might be?

[Rustsmith]

I have no idea. All that I know is that I am suddenly susceptible to all sorts of side effects to meds that cross the blood-brain barrier and because of the chronic depression that I have experienced since I was in high school, I suspect that all this could be due to some sort of neurochemical imbalance that may or may not be associated with RLS or may be some sort of common denominator for a number of issues. The first time that I raised the issue of my RLS being somewhat different from what others experience, my doctor sort of dismissed it. But this last time I got the impression that she may be coming over to my way of thinking. First it was Wellbutrin (which I now understand because it is a close chemical cousin to meth) and now Lamasil, which so rarely causes restlessness that restlessness isn't often listed as a side effect in the reference files that doctors check. Two of these hyper-RLS side effect reactions that require extended use of extra opioids all within 12 months is starting to be very, very old.

[badnights]

There are times I can somehow get the RLS to calm down and I'm still wide awake as if I took an amphetamine. I always thought this was part of the RLS

I have get the same thing, lots. I was always torn between thinking it was opioid-induced hyper-alertness, and thinking it was part of the disease. The Johns Hopkins team has said hyper-alertness in RLS/WED is due to the excess glutamate in RLS/WED brains, but maybe they are referring to our daytime alertness, which is all out of proportion to the tiny amount of sleep we get, and not to the insomnia that seems to plague us.

As I look back on my pre-diagnosis, pre-medication days, my complaint was not of WED/RLS; it was of being tired all the time and not sleeping well. I described the sleep issue specifically, and I now recognize that I was describing sleep-maintenance insomnia. Since beginning opioids, I have definitely had opioid-induced alertness that lasts 3-4 hours at least, every freakin' night. And I have realized lately that I probably meet the criteria for Delayed Sleep Phase Disorder. Whether it has been caused by prolonged opioid use or was always lurking, I don't know.

Since the main complaint of WED/RLS patients is chronic lack of sleep, and that lack of sleep is what so dramatically reduces our quality of life, maybe you can suggest to Dr Ondo that he find some resources to study this problem.

Makes me wonder if there could be could be a GI/gut issue.

Has to be....

[ratfancy]

Very interesting thoughts. I have rapid-cycling bipolar, treated since 2007 with a VNS implant. So I do not experience bipolar symptoms really at all anymore. Also, I have sleep apnea, which is anatomical and probably should have been treated earlier in my life. Now resolved. But as bipolar set in in my 20s I realized I am hyper-alert and I don't suffer from sleep deprivation as much as other people. For years (before DA treatment and subsequent augmentation), I went to work with almost no sleep and functioned well. It was not pleasant, but I performed my job well. I also have Raynaud's syndrome. These are all neurological problems, so I wonder how it's all related.

[stjohnh]

It's been my theory for the last several years that the sleep disturbance of RLS is a separate phenomenon from the urge to move that is the hallmark of the disease. Certainly the adenosine paper that discusses glutamate adds some experimental and theoretical credence to that idea. Additionally the known more or less 20 genes that are associated with RLS makes the likelihood that there are variations in symptoms among patients with RLS almost a certainty. We don't know which of the 20 genes or which combination causes the urge to move symptoms, causes the brain iron deficiency problem, or other possible symptoms that we have not yet identified as being associated with RLS.

The most common pattern of people with RLS is a person notices jumpy legs, just figures they're anxious or something, and ignores it for sometimes many years until it actually interrupts their sleep from the urge to move symptoms. At that point they go see a doctor, and possibly get correctly diagnosed and possibly not. Most patients with mild RLS get treated with a dopamine agonist which causes the urge to move symptom to improve, and since at that point it seems as though the possibly separate sleep disorder has not really kicked in yet. Most folks with mild RLS sleep pretty well if they're on a dopamine agonist. As the disease becomes more severe a separate sleep disorder becomes more and more apparent, and reading this board it's clear that at nearly everybody with moderate to severe RLS has some kind of sleep problem, regardless of whether the urge to move symptom is controlled or not.

Another observation is that once a person's RLS has advanced to the point where they have sleeping issues in spite of good control of urge to move, almost all people do not get good results, and frequently no results at all, from commonly prescribed sleeping medicines. These help the majority of people with common types of insomnia but help very few RLS patients. It seems as though on this board only gabapentin and THC have fairly reliable sleep-inducing effects for RLS patients.

As Steve pointed out in the other current sleep thread, the "good sleep hygiene" mantra that nearly all US docs repeat to their patients with insomnia, just doesn't help for RLS patients, another point suggesting that RLS insomnia is fundamentally different than common forms of insomnia.