New to this board

[jhbrown]

I'm new here. I've had RLS for a long time, mostly under control, but I recently experienced augmentation (on Ropinirole) and switched to Gabapentin, and wanted to ask some questions about others' experience with that.
So, some background: I would say I have a moderate case of RLS. Ropinirole worked (OK) for me for years, but in May, I was out of the country, my symptoms got way worse real fast, and I didn't have enough Ropinirole with me to increase the dose (which may not have done any good anyway). I suffered, and started educating myself more about the latest RLS treatment options. When I got back, I tapered off Ropinirole and started up on Gabapentin. I'd say it's working mostly OK, but not always.
I would divide my symptoms into two categories. One is classic restless leg, that urge to move that builds up and builds up until you just have to move. The other is leg jerks that just seem to come out of thin air. There's no build up, just suddenly my leg jerks. For me, the first symptom usually shows up in the evening, when I am awake but sitting still (e.g. watching TV). The other seems to happen after I go to bed and just start to fall asleep. Needless to say, you can't fall asleep when your leg jerks every minute or so.
So, for the most part, with the switch to Gabapentin, my classic RLS leg-moving urges are controlled. But the leg jerks are not. I'd say they upset my getting to sleep about 50% of nights. When that happens, I have taken another 100mg of gabapentin, or (because I still have some) .25mg of Ropinirole. Of course, it takes a while for either of those to kick in, so I stay up and can't get to sleep until later.
So my first question is, am I courting more augmentation problems if I mix in that one pill of Ropinirole?
My second question is about the timing of my Gabapentin pills. My Rx says to take the same amount three times per day. The info sheet with the pills emphasizes that it is best to take the pills evenly throughout the day. But, I harbor a suspicion that that advice is for taking Gabapentin for whatever else it is prescribed for, not necessarily RLS. Especially since only Gabepentin Encarbil is FDA approved for RLS, and "simple" Gabapentin for RLS is "off-label".
I have read that the half-life of Gabapentin is around 6 hours, so I wonder why I should take pills in the morning when most of it would be eliminated by the time my symptoms would normally appear. I haven't been willing to totally buck the advice, so I take one pill with breakfast, two with lunch, two at dinner and two later in the evening.
I am curious if anyone knows a good reason to take Gabapentin evenly throughout the day as opposed to a few hours before symptoms are expected.
I also realize that perhaps that is a question best answered by my physician, but to be honest, I'm not sure he is that up-to-speed on RLS, and at this point, I may know more than him. And this community may know a lot more than him or me.
My third question is about the leg jerks. Is that considered PLMD? I've read that generally, it is treated the same way as RLS. Do others have any advice on getting that under better control?
Thanks in advance,
Jeff

[Rustsmith]

1) If you are only taking the ropinerole a few days each week, you are probably not courting a new bout of augmentation. It is usually acceptable to take a dopamine med occasionally. Augmentation occurs when we take it every day to manage our RLS symptoms.
2) PLMS is a condition where you kick your legs while you are asleep. There are a small number of people who also have it during the day, but generally it needs to occur during sleep. You might be experiencing myoclonic jerks. But you need to speak with a neurologist about that.
3) Each of us usually ends up developing our own set of timing for when to take our various meds. The normal guidance is to take your meds a short time before your symptoms are expected to start (since taking them afterwards just means having to wait). I use gabapentin mainly to help me overcome the insomnia side of RLS, so I take my pills about an hour before bedtime. That allows them to start to work and gives me five hours before I hit the half-life time. I also use an edible marijuana product that kicks in around the time that the gabapentin starts to fade, so the two of them help me sleep through the night. The only problem is that the marijuana doesn't help with the need-to-move.
4) As for the treatments for PLMS, there are not any guidelines for doing this. However, most doctors find that treating PLMS with dopamine products works about as well as it does for RLS. As for PLMS and augmentation, that is a question that I haven't seen addressed anywhere.

[jhbrown]

Thanks for the reply.
I forgot to mention that I have been taking an oral iron supplement (with vitamin C) since June, but I can't say that I have seen any improvement from that.
And I have wondered about marijuana edibles. I may give it a try someday soon.
Jeff