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Restless Leg Syndrome

Sleep Health | Last Active: Apr 1, 2023 | Replies (268)

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@barbarn

@lynnkay1956 and @suecreader LOVE to hear that someone else gets the opposite effect that Benedryl is supposed to impart! It "wires" me!!! Certainly cannot take it for "sleep"! I was taking Requip for the RLS, but as with you, had to start increasing the amount. So my dr switched me to Mirapex - which I thought would be the answer!!! For 10 days I had no leg movement! But then it began again, and am now increasing the Mirapex dosage! All the while I am taking gabapentin, and Tramadol, tho' only in the late afternoon and at bedtime. As with you, no alcohol or caffeine after 2 or 3 pm. Thinking of asking my dr about Neupro? Also thinking - what if ... one could alternate Requip and Mirapex? ...daily? weekly? monthly? Just a thought! I also have pain from spinal stenosis and/or neuropathy, so when you add the jumping around from RLS or PILM it becomes TERRIBLE!!! You dread evenings and night and would do almost anything (or take anything!) to get a decent few hours sleep! The Mirapex makes me sleepy, so it is wonderful to take at bedtime - however that effect lasts into the next day and I am afraid to drive or do anything that requires my full attention. What to do...

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Replies to "@lynnkay1956 and @suecreader LOVE to hear that someone else gets the opposite effect that Benedryl is..."

@suecreader I was prescribed gabapentin as part of my pain relief regime but also noted that it is also used to treat restless leg syndrome. Maybe you could ask about this?

@barbarn Hi I'm jumping in hear about Mirapex maybe the Dr can give you a different dosage ,since it helps you I know I'm an advocate of pickle juice but there are times when I need to take Mirapex my dosage is 0.25 I only take it when I need it.

Yes! @barbarn that has happened to me too, the fact that so many things that worked, only did for awhile, and then it stops! Such a relief to find something and get some much-needed sleep, and then so disappointing when it stops working! After only ten days when you were thinking you were going to get relief; that is especially disheartening. I also tried Mirapex once, but that has been about 10 years ago, and we (the doctor and I) stopped that since the headaches were so severe, I couldn't function. I took Gabapentin and Tramadol for two years too, although now that Tramadol has been reclassified, getting refills can sometimes be a bit difficult since my regular MD suggested I taper off. I was taking two 50 mg tablets at night for sleep, plus 600 mg of Gabapentin since that was the only thing that gave me even minimal relief. Even at that, I was only getting 1 1/2 hours of sleep at night, interspersed with three-four 15 minute intervals when I was able to doze a bit before the legs propelled me out of bed. I was unable to lay still at all, and so I totally understand what you mean about the dread and feeling of doom you feel as night approaches . . . . it felt like every night was a marathon in trying to control symptoms and walking/jogging through the house. And, like you, getting no sleep aggravated a host of other symptoms - high blood pressure, increased fibro pain, depression, etc., and I still had the forgetfulness with that since I learned that both Gabapentin and Tramadol can interfere with memory so coupled with no sleep, I felt like a walking zombie. I have wondered that too actually about alternating Requip with something else that might work. I haven't asked my doctor at Mayo about that however, since I had lumbar surgery in July, and we didn't want to be changing prescriptions while I was in the midst of recovering since I'm sensitive to many different medications already. I might add that higher dosages of Tramadol did help, which I was taking after surgery (other opiates make my restless legs worse, and they make me really sick as well), but again, taking too much of that is a double-edged sword due to possibility of addiction. It is so hard to find something that works that helps you sleep only to haveside-effects that interfere with your life isn't it? I tried to keep telling myself that RLS is not as bad as say, a cancer diagnosis; however, even tho I said that aloud to other people, at night I would feel hopeless since sleep is so necessary. I find that a good night's sleep now with Neupro has made it possible for me to stop taking Tramadol every night. It is worth a try to ask your doctor about Neupro, I think, although just a heads up, it is in the same 'family' as Requip. I was afraid that would mean it would stop working, but it has been two months now that I've been taking it and so far, it hasn't reached that augmentation point where I need more, and more, and more. So, I'm keeping my fingers crossed. Also, it is expensive @ about $1,200/month, but my insurance covered half that amount ($60 is still a bit when other medications are a bit on the pricey side too). However, I looked on the website for Neupro, and they offer a patient savings program and will issue a card you can use. I am going to see what happens in terms of cost when I pick up my next prescription in the next few days. Good luck - I so hope you get some relief!

@barbarn I do find an occasional half of a Benadryl will help me sleep, but when I had cirrhosis I was given a prescription for oxycodone and I couldn't sleep at all. I literally lay in bed until about 6:00 in the morning staring at the ceiling. Then of course I was exhausted the next day. The doctor then gave Dilaudid, but that had the same effect. I haven't needed to take any drugs of that nature since then so I have no idea if it was related to my cirrhosis or if I would still have the same problem.
JK

I tried alternating Mirapex and REquip when one augmented and that worked for a while but since they are both the same class of med that doesn't work for me anymore. MIrapex works great for me until it augments and then I have to take what my neuro doc called a "drug holiday" when I really don't sleep at all. I take this holiday for at least 3 weeks (by then I'm a total wreck) and then can go back on the Pramipexole for 2-3 months until it all starts again. Have tried Neupro patch, carbadopa/levidopa, Lyrica, gabapentin but nothing works. I get a little sleep with oxycodone but have trouble getting it prescribed. RLS is ruining my life as I have to plan these "holidays" when nothing else is going on in my life - can't read, can't concentrate on preparing lectures, can't knit or even spend time with friends. As other people have said, I dread going to bed and having my legs jump!