RLS "control" by Jet Lag and Circadian Rhythms?

[Rustsmith]

I first started showing symptoms of WED many years ago. My work required me to travel internationally and the 8-24 hr plane rides could be unmitigated torture. It was the outbound trips that were really bad. Return trips were generally not too bad, even though I was usually exhausted from the stress associated with the work.

About 2004, my GP suggested that the problem might be RLS. He said that he could prescribe Requip, but that there were potential side effects and that I should probably try taking iron supplements first. He never did a blood test.

I found some relief with the iron supplements, but then my trips become quite frequent (at least one/month with an 8+ hr time change). This lead to a state of near permanent jet lag, so my circadian rhythm was always messed up. However, during this period, I did not notice my symptoms getting any worse, possibly because I had learned to cope with them on long flights and long car drives.

Five years ago I retired, so I greatly reduced my travel. A couple of months, the classic RLS problems had spread to my arms and body. Note that I was not taking anything for WED at the time other than an infrequent iron pill, so this was not augmentation but was progression of the disease. It took 5 yrs to get to the point where I could be properly diagnosed with PLMs and RLS during a sleep test for chronic insomnia. I was given 0.125 pramipexole (which has worked beautifully for 30 days).

My question is whether anyone else has experienced this state where chronic jet lag or regular disruption of their circadian rhythm has prevented progression of untreated symptoms over an extended period of time.

Steve

[ViewsAskew]

In a way, I did. I still needed medication, but for a long time I just kept adjusting my bedtime so that I was awake during the worst of it and slept when it was the least problematic. Over time, the "worst" switched from 9-11 to 11-2 and finally to 12-3 AM - so that now I find my best sleep is between 6 AM and 2 PM, instead from 2 AM to 10 AM as it used to be. I've effectively become the equivalent of a third shift worker. I never did well at first shift as I've had PLMs since I was a toddler, but I could function during typical hours - now I cannot at all. I've long talked about working my way around the clock over time - sleeping from 7-4 for a few months, then 8-5, and so on, until a few years from now, I arrive at a circadian rhythm of sleeping from 10-7 . While I'd love to get by on 6-8 hours sleep, I've always needed at least 9, so I won't worry about that - but I surely would like to be awake when the rest of the world is!

I do hope that your doctor tested your ferritin recently. I'm very happy pramipexole is working and hope it continues to. Sounds like you already know a lot about the disease, so I'm guessing you have asked for it to be tested in case the doctor didn't suggest it.

[Rustsmith]

Yes, my doctor had my ferritin tested at my last visit. The number came back as 43. I am currently taking iron tablets twice a day and it seems to be helping in that the Miraplex was only working for 23 hrs and now I am usually able to get to the next pill with few symptoms. I go back for my followup in early December, so I will see how much the ferritin has come up by then.

[badnights]

I would guess the same thing: the fact that you were awake at irregular hours probably meant you ended up being awake & moving during symptomatic times, so were taking care of the symptoms with movement. Once you resumed a regular schedule, you were trying to sleep or relax during symptomatic times. It's the only thing that occurs to me to explain it, but you will know better than me if it might be true, or if something else has to be going on.

The second link after my name below this post goes to a page of links, all having to do with augmentation, and some to do with ferritin as it pertains to augmentation in RLS/WED. You should be sure that your doctor is aware of the research associating low ferritin with increased risk of augmentation on Mirapex & other DAs (the first one in the list), and is aware of current recommendations regarding dose (the last one in the list, the extract, is good for that, or the Buchfuhrer paper). The Johns Hopkins one is an educational read too.

[Rustsmith]

Thanks Beth. I have been reading quite a bit about augmentation and the problems that people go through getting off of DAs. It was my sleep doctor who originally prescribed Miraplex. I am fairly confident that he is aware of the problem since they have me on a fairly short revisit schedule for close monitoring. I go back in another four weeks and will be asking a number of questions at that time. One of them will be whether I continue my relationship with them to cover WED or whether this is something that I should transition over to the neurologist who has been treating my migraines. I would like to reduce the number of doctor visits, but I also do not have as much confidence that my neurologist will be as familiar with WED.

At this point, I am going to continue to go with the flow. I know what to watch for with the Miraplex, so for now this is not something that I am going to rely too much on the doctors. I will need one of them when it comes time to make a change.

Steve