Circadian Disorders and Depression

For everything and anything else not covered in the other RLS/WED sections.
tea4one
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Circadian Disorders and Depression

Postby tea4one » Tue May 03, 2016 10:40 pm

I was wondering how in the world I might get out of this neverending sleep wake cycle that starts around 0200-0300. Its seldom that I can ever fall asleep at an earlier hour even when I get very little rest (3-6hrs daily). Any ideas? Its getting to the point that I wonder if I may ever find gainful employment as I can barely rouse myself at 0900.
Anyone else who is succesfully treated for RLS have this problem?

ViewsAskew
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Re: Circadian Disorders and Depression

Postby ViewsAskew » Wed May 04, 2016 6:07 am

Most of us have it. The docs at Johns Hopkins are even studying it - when we get rid of symptoms, we're still awake. It's 1 AM as I type this and I while I'd love to get to sleep soon, I know it's unlikely. The best time in my post-severe-RLS-onset life was about 10 months when I went to bed whenever I was ready and awoke whenever I was ready - if my legs were a problem, I just stayed up and didn't worry. If I slept at 7 AM and got up at 4 PM, so be it.

I lost weight, was happier than I had been, and got more done. But, I couldn't work doing it.

I stopped when I got a 10 month contract to teach in a Master's program. I only had to be there twice a week and thought it would be easy. But, it was still hard. Didn't matter if I was rested or not, I had to show up at 11 AM on Wednesday, for example. If I could have come whenever I wanted, it would have been fine. But, sticking to a schedule was very hard.

Those of us with constant symptoms often find it very, very hard to work and have a life of any kind.
Ann - Take what you need, leave the rest

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ViewsAskew
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Re: Circadian Disorders and Depression

Postby ViewsAskew » Wed May 04, 2016 6:08 am

Oh - one study found that those of us with chronic RLS had 2-3 times the risk of depression and many times the risk of anxiety disorders - no wonder, I say.
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

tea4one
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Re: Circadian Disorders and Depression

Postby tea4one » Thu May 05, 2016 5:03 am

Hi Ann,

Thank you for your candid response. It confirms what I thought, but didnt want to believe. I've been contrmplating another try at stopping meds or a an extended vacation to see if it may help to reset my sleep cycle, but I know I will be miserable to put it mildly. I'm tired of the opioids due to short term memory loss etc and remember having few severe symptoms when transitioning off of Mirapex. I think I went a little over 2 months with no meds prior to getting in to see Dr. Earley. I honestly thought I might "lose it." Little pain after a time, but still could not sleep till 0800 or later. I believe that factor, had and still has, as much impact on my health as RLS, for all of the obvious reasons that you spoke about in your response.
I don't want to live like a vampire. No one understands this condition outside the few specialists. I cannot handle the social and self scrutiny and My self-esteem is in the pits because I cannot forget the things I once could accomplish.
I keep making plans to accomplish goals, but often stop short when I remember this damned condition.

Thanks for giving me a place to vent, and thank you for your feedback.

Jayson

ViewsAskew
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Re: Circadian Disorders and Depression

Postby ViewsAskew » Thu May 05, 2016 7:39 am

Jayson - one thing I can say is that there are many ways to deal with the meds to change it to make it better. Many people here have heard my story...but here are some of the highlights (or lowlights!).

Mild RLS was turned into 24/7 RLS when I tried to get treatment for severe PLMS. I spent 18 months augmented and trying to get help. I lost my job, my friends, and had NO life. I slept at most a couple hours a night and at the end would sleep 20-30 minutes total each night. That was in 2004. Since then, I've had about ten doctors, been fired by two doctors, only had one doctor who truly gets it, and have taken about 15-20 meds - alone and in combination. I eventually found a way to do some consulting work; this last year I worked as a professor teaching online classes. I couldn't have done that 5 or 8 years ago. I won't lie - it was not easy being available every Tuesday and Wednesday for office hours, but I made it work. I had tried that 3 or 4 years ago and failed after just 2 weeks. That I managed for 10 months was a big thing.

Opioids do not work well for me when I take them regularly. The lethargy and memory loss is debilitating. I also havedependence tolerance and need to increase doses. Pramipexole stops the PLMS and the RLS, but has so many side effects that it is untenable to take regularly, let alone the issues with augmentation (it started within 2 weeks of taking it - so I cannot take it regularly). I've found that if I use pramipexole during the week with an opioid chaser just before sleep, the worst side effects are mitigated. I also have found that gabapentin works really well to help me sleep, but not to control my RLS. It also caused depression with regular use, so I only use it when I really need to. But, it has helped many of us get to sleep when we otherwise could not. I've had two infusions - they didn't resolve it, but they helped. I want one more - we'll see.

I've also learned that medical marijuana and kratom can be very effective for many of us. And, that alternating meds may be one of the best ways to resolve issues we have. We have to fight dependence and escalating doses - that is very harmful to us. So are long term side effects, and mixing and matching often is the only way to get past that.

Don't be afraid to keep trying. Keep changing what you take and how you take it. There may yet be a way for it to work for you, too. There may not. But, if I'd given up after my third, fourth, or even 20th try, I'd not be where I am today. I do not have my whole life back. Maybe I never will. But I have a life that I can live now - and I didn't have that for a long time.
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Circadian Disorders and Depression

Postby badnights » Thu May 05, 2016 10:28 pm

jayson wrote: ...could not sleep till 0800 or later. I believe that factor, had and still has, as much impact on my health as RLS
jayson wrote: My self-esteem is in the pits because I cannot forget the things I once could accomplish.

It could be me writing your posts. Talk about self-esteem issues. Memories of what I once could do; of how competent I was, how efficient. I keep trying to accept and to some degree I have made my peace with the new me, but not totally, and I can't stop fighting it.

My circadian offset has gotten so bad that I can't sleep before 5 or 6 aM, sometimes later. I have an accommodation at work whereby I can start at 1 or 2 pm, leave at 6 to shop or go to the gym or just go be a human being (otherwise everything would be closed and everyone in bed by the time I finished), then around 11 or so (if I'm doing well) I start work again, from home.

I wasn't surviving on a normal schedule, and even this schedule is hard. But I'm faking my way through it. Do you take opioids? Do you find they have an alerting effect on you? I've often felt that they cause this offset; but the other half of me thinks it's part of the disease.

My salivary cortisol levels were tested at 4 times during the day recently, and they were very low all day long. They're supposed to spike in the mornings, which wakes you up and gets you moving, then taper off during the day so they're low in the evening. Mine are always low. Morphine can block production of cortisol, and I take hydromorphone .... I'm waiting for the results of another test that should tell whether I am not making cortisol, or making it and breaking it down before it can be used. If I'm not making it, it will be likely that the hydromorphone is the culprit.

I have wanted to stop my meds for a long time, just to see where I am. To try to re-set, if that's even a thing. Now I have one more reason to do it - so I can get my body to make cortisol again. Maybe that will help with the circadian offset. Or - maybe the circadian offset is a primary component of the disease, and I will still be a vampire, as you put it. What scares me, besides the obvious (withdrawal, untreated WED for weeks, no sleep while being tortured) is that I don't have a plan for what to do after I'm off. Just go back on??? hahah

My semi-plan is that I want to try getting iron infusions, the first one before I go off the meds, then again after, as needed, following Allen and Early's protocol. Then maybe try rotigotine. But I augmented within days on ropinirole, so I can't count on that. Probably I'll have to go back on opioids at some point. I just want a bit of a plan ... because I certainly won't be able to think when I'm off my meds. Oh ya, and I will need a month or three of leave from work.
Beth - Wishing you all restful sleep tonight
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Rustsmith
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Re: Circadian Disorders and Depression

Postby Rustsmith » Thu May 05, 2016 11:06 pm

My personal opinion is that the circadian disorder is a part of the disease (I am hoping that the glutamate research at Johns Hopkins will be an indication of this). I can remember during the early part of my career having what I now know were RLS symptoms when sitting on international airline flights (across the Atlantic or Pacific). I do not remember having many problems at home, but my job kept me traveling at an ever increasing frequency throughout my career. There was one fall when I was on an airplane every single weekend from Sept 1 through Dec 1. I finally decided to retire when the travel had me outside the US for one week a month over a period of more than two years.

I provided this so that you can understand that I probably had chronic jet lag for a period of at least 10 years. So, my day/nights were always shifting around - but no RLS symptoms except for when they served meals on long flights and so I felt trapped.

So what happened when I retired and stopped traveling? I was hit by severe RLS within about three months. Severe as in arms, legs and torso. I had never felt anything like that ever before. But I was no longer jet lagged all the time.

So I cannot help but suspect that my RLS had been increasing in severity for all those years, but the jet lag kept my circadian rhythms in such disarray that the RLS was never able to take over like it has now. Also, the RLS now has me so that I am pretty immune to jet lag. I have been on several trips since the RLS took over where I had time changes of 10 to 12 hrs. Even that was not enough to trigger jet lag.

Therefore, I have to believe that there is a connection between RLS and circadian issues.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Circadian Disorders and Depression

Postby badnights » Sun May 08, 2016 1:00 am

lol you probably don't remember that I'm the one who suggested to you that jet lag was masking your RLS

I generally agree with you about the hyper-alertness being an integral component of the disease. I just want an explanation for the alerting effect of the opioids, which is pronounced and convincing. The glutamate research is not likely to break down any barriers. It's an important step, but at best it will confirm the results of the pilot study. What we need is multiple labs working on this problem. That's what I put in my letter to NIH.
Beth - Wishing you all restful sleep tonight
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ViewsAskew
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Re: Circadian Disorders and Depression

Postby ViewsAskew » Sun May 08, 2016 6:46 am

I agree, badnights - while the hyper-alertness has always been part of my life, the opioids take it to a completely different level. Absolutely and completely. While the anti-depressant is working relatively well and I am out of the worst of it, I am not 100%. But, tonight is the 100% opioid night. We went to a family dinner and on the way home, I put on some music and rocked out the 90 minute ride home. As I was dancing in my seat at midnight, singing aloud, my husband turned to me and said, "Is this a methadone night?"

Duh.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Circadian Disorders and Depression

Postby badnights » Sun May 08, 2016 7:30 am

Ah! You made me laugh :)

The issues of opioids and hyper-alertness really need work. The circadian aspect, too.

I've been following your depression thread when I can. For decades, I've had a low-grade depression pretty much always present in the background of my life. I would be joyful now and again, but my base state was slightly depressed. For the last 15 years or so, i've also had a low-grade anxiety. Whenever I stopped doing things, I would feel like there was something I should be doing. I would run through all the things in my life that might need attention and there would be nothing requiring action, but I would be unable to shake that feeling that there was something important I needed to do.

About a year and a half ago, I started going to a high-intensity-interval-training and weight lifting gym. About a year ago - maybe not that long - I started eating a lot of raw fermented foods, as part of a SIBO treatment. A few months ago, I realized that at some point in the last year, both the depression and anxiety had disappeared. I looked back over my life and those are the only two things I can figure might be responsible.

It is really, really bizarre. My WED is worse, or at least I am experiencing worse symptoms because I cut my hydromorphone dose, my circadian offset is extreme, I'm always sleep-deprived and can hardly drag myself around most of the day, I'm unable to do my job and unsure of my boss's intentions regarding this, I've been swamped with more volunteer obligations than I can handle - - - and yet, I am not depressed, not anxious, I am calm and my base state is not depressed. I come home and either do what needs to be done or don't, and either way, I'm fine. There is none of that anxiety. It's very nice. I Think "wow, some people have lived their entire lives like this".

Gut bugs or exercise. But if it's exercise, hockey and broomball were unable to do this for me, so it has to be a specific kind of exercise, weights I guess. If it's the gut bugs, then kombucha alone didn't do it, probiotic supplements didn't do it, but homemade sauerkraut and fermented radishes and other stuff are doing it. I hesitate to choose one or the other, and I won't close my mind to its being due to something else entirely, but I tend to think it's due to fermented food because the timing fits better.

Any thoughts on this? Has anyone else experienced the disappearance of long-term depression or anxiety?
Beth - Wishing you all restful sleep tonight
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tea4one
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Re: Circadian Disorders and Depression

Postby tea4one » Sun May 08, 2016 8:50 am

Thank you to everyone for the responses. I plan to return the favor.
My burning question now is How is this the first I've heard of this correlation? Dr. Earley has told me numerous times that I am just a night owl, but I knew there was something more. I have never in my life had this much difficulty with falling asleep before 0200 at the earliest unless not adequately treated for my RLS. Maybe I haven't been doing enough research of my own.

The opioids have an alerting affect for me, as well.

ViewsAskew
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Re: Circadian Disorders and Depression

Postby ViewsAskew » Sun May 08, 2016 9:06 am

The research was published a couple years ago, IIRC - it was initial and they are following up, but glutamate was implicated as a reason we are awake and functional at night. If you do a search here in glutamate, you will likely find several discussions about it. Before that, we talked about it here quite a bit, but we didn't have anything to back it up.
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

tea4one
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Re: Circadian Disorders and Depression

Postby tea4one » Sun May 08, 2016 7:50 pm

Thanks again, its difficult to learn that I may not have the will power to beat this thing, but I know I'm not alone.
I keep wondering if I might endure the pain and anguish long enough to allow the symptoms to subside enough that I could take only gabapenten or nothing at all. I survived a couple of months or more once, somehow. And, you know the RLS pain subsided but the circadian problem got infinitely worse. I returned to Hopkins for the iron infusion to no avail.
Have you ever heard of anyone succesfully coming completely off of medications for an extended period?

Rustsmith
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Re: Circadian Disorders and Depression

Postby Rustsmith » Mon May 09, 2016 12:40 am

@badnights, you are right in that I forgot that you suggested the link between jet lag and RLS. I can only justify that with the fact I have had a not of near sleepless since then :lol: .

However, I have taken several long distance vacation trips since I was diagnosed that required substantial time shifts (2 were 12 hrs). In each case, I found that I was sleeping much better at night than I did normally and that the "benefit" lasted for a number of days when I returned home. For quite a few years, I have been pretty much immune to the sleep issues that "normal" people associate with jet lag. So, I can only assume that shifting my clock around provided me with a VERY expensive form of RLS treatment. I should also add that I was taking medication during each of these trips that managed my urge-to-move symptoms although I was augmenting on pramipexole during the latest trip. On that one, the night crew on board a cruise ship got to know me pretty well.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Circadian Disorders and Depression

Postby badnights » Mon May 09, 2016 1:48 am

@steve: which way were you going? I find travel eastward very draining, westward is a snap.

@jkendrik: it's not surprising you haven't heard of it because the only study I know that's been done on it is the Johns Hopkins pilot study published in 2013. They are doing an ongoing study that isn't published yet. But you're right, it's huge. So many of us experience the alerting effect of opioids, and a very strong hyper-alertness during our evenings and nights (as well as more alertness than expected during the day, compared to non-WED people with similar sleep loss). It kind of blows my mind that researchers aren't all over this, but a look at the literature will tell you why - the existence of this phenomenon is not covered in any general description of WED/RLS that I can recall (although I don't recall everything I've read), and most medical students don't delve any deeper.
Beth - Wishing you all restful sleep tonight
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