Restless Leg Syndrome

Interesting @mamacita,that your RLS manifests differently - it sounds like the CPAP machine helps you with getting a good night's sleep? That's very good news since it helps you function much better the next day and beyond too. I agree with degarden_girl that it's important to get your machine fixed. From people who have suffered through the getting-use-to-it part with the face covering, along with the straps to keep the mechanism in place, it ends up being worth it in the end. Many of these people won't go anywhere without their machine, so that also speaks to its importance.

@suecreader I just thought I would outline my routine in case it is something you could adopt.

I take 4000 IU of Vit D at bedtime. I am usually able to go to sleep and stay asleep, no RLS, for several hours -- sometimes as many as 4 hours. Then I am wide awake but still no RLS. If I cannot go back to sleep I first take a 100 mg cap of gabapentin and then about 10 minutes later, I take 1/4 to 1/3 of a 10 mg tab of Ambien. The Gabapentin stops the PILM and maybe RLS from kicking in as a result of the Ambien. This routine works for me. I am pretty careful about how much Ambien I take but every so often apparently my nibble was a bit more than usual and the foot flapping begins. But, then I fall asleep and either I no longer notice the foot flapping or it stops. The foot flapping is from PILM triggered by the Ambien, not from RLS although I think the two are somehow connected conditions.

I was not finding any of the Parkinson's drugs were good choices for me, including Requip. They made me absolutely ill. But this routine keeps me rested and sane. Some people will say I shouldn't take Ambien but my MD says it is fine if it resolves the sleep issue (I have had chronic insomnia which has continued to worsen since menopause). For me, this amount of Ambien just gets me back to sleep and I am then able to sleep for a sufficient number of hours that in total, gives me 7 to 8 hours of sleep a night.

You are in such misery from this awful syndrome, I do hope you are able to try this routine and have some success with it.

@degarden_girl and @suecreader - those of us who suffer from RLS and PILM can so relate to you!!! I too worry about the memory problems with gabapentin. My dr just switched me from Requip to Mirapex, and for the first few days I thought that was the "miracle" cure, but the movement is back now. I agree that we each seem to need to find our own regimen, for me the Mirapex seemed so wonderful, but it makes me soooo sleepy - I fall asleep in the middle of a bridge game!!! (Not too bad at bedtime tho') And I think the Mirapex also does something to my memory!!! I will definitely take more Vit D!!! Another thing - I try to take a Tramadol when it is time to prepare dinner, as that gives me an energy boost for the evening so I'm more able to get up and move around when the RLS sets in.

I have struggled a lot with restless legs and overall jitters at night. I use tonic water for the quinine....it helps. But I also put two tablets of AlkaSeltzerGold (must be the Gold!) into a glass of water and drink it. The results are oddly amazing. Amazon sells the AlkaSeltzerGold....I buy it by the carton! Try it...you will be so glad you did! Best wishes!

@barbarn @vickiekay Tramadol is a pain medication. Interesting that you find it provides you with energy. I looked at the ingredients of Alka seltzer Gold and they are all antacid meds. I know that heartburn and GERD can cause wakefulness and can also trigger premature ventricular contractions (PVC's) and both can cause problems sleeping. RLS seems to present itself in that stage where we are trying to fall asleep. If it is present after we fall asleep, I guess we don't notice it or don't care! But if there is some issue keeping us from going into a deep sleep, I would think that would also allow us to be more affected by or more aware of RLS.

This stuff is so complicated!

Thank you @barbarn, it's good to know (but I'm not glad that you are experiencing the same memory problems) about the side effects of Mirapex. I think if Neupro stops working, that might be a next step, so it is good to brace myself. That falling asleep involuntarily is disconcerting isn't? However, sleeping at night becomes such a treasured commodity that I'm willing to deal with almost anything else. An added note, I was taking Tramodol for awhile before I started with Neupro . . . . . I learned from the pharmacist that can also affect memory. Just so you know . . . . .you might be getting a double whammy there. However, I'm not advocating stopping since I was taking 100 mg before, and it was the only thing that would help with pain AND helped me sleep too.

@vickiekay - thank you!!! I will order AS Gold! it is hard to find here in my small mountain town! so nice to know I can order it from Amazon. bb

@degarden_girl - RLS also gets you anytime you sit down to relax (as in watching TV in the evening) - it also awakens me about 4 or 5 am - sometimes it is accompanied by pain, sometimes not. As far as the Tramadol, many others here in Mayo Connect have volunteered that it seems to contain some kind of stimulant - or maybe it just deals enough with the pain that it's effective!?

@barbarn Interesting about Tramadol. My mother was prescribed tramadol for her RLS which also was a problem anytime in the evening. She used to stand behind her chair and lean on the chair to watch TV. She had to stop taking Tramadol as it seemed to be causing her to faint and then she was put on Gabapentin. It seems there are many degrees of RLS and different manifestations and we all have to do what we have found works for us. I am so grateful that the Vit D seems to keep it in check for me and I well recognize that I may not have it as bad as others.

Yes, we are unique individuals so it is not surprising that some things work for certain people, and not for others who need to find their own 'just right' solution. It's the searching, searching for that solution that can be exhausting, and in the meantime without much sleep, it can be discouraging and feel life altering.