Sleep expectations

[maddielouise1]

I was just wondering what I should be expecting as far as improved sleep is concerned now that I'm taking Mirapex and Klonopin for my RLS and PLMD? I usually go to bed around 10:00 on work nights with the hope that I can make it until 6:30 and I have yet to get there. I usually wake up once to go to the restroom and then again around 3:30 or 4:00 when I find I toss, turn and move until it's time to get up. I don't think that's acceptable, but then again am I expecting too much. In other words, I wonder if this is as good as it gets? How do others feel about their sleep time?

[Sojourner]

m, never took mirapex but had a good run with klonopin. Guess lots depends on your chemistry, how meds effect you etc. It may take some time for your body to get adjusted or you may have to adjust the meds, timing of meds etc. before you reach your optimum. I know when I first started the klonopin, years ago, I got a good 6 or 7 hours of sleep. Oh, what I wouldn't give.... But, then it began to lose effectiveness and actually wound up keeping me awake so I discontinued it. Don't know or perhaps remember how much Klonopin you are taking but maybe the doc can work with you on that to see if you can get more sleep or stay sleeping longer. Wonder, if you can split the dose, some at bedtime and some when you wake up, and see if that does any better for you. Sometime, nothing is perfect, and you just take the best you can get. But, tinkering a bit and discussing options with your doc may be helpful. Have you tried things like a cup or warm milk or something like that when you awaken to see if that will help you get back to sleep? Best wishes.

M.

[maddielouise1]

Thank you Mark. I take .5 mg. of Klonopin and 1 mg. of Mirapex (which the doctor increased when I originally told her that I still was waking frequently). I've resorted to getting up and reading when this happens and then going back to bed which worked last night. It did help to stay up a little later too. Funny that you mention warm milk. I know it has a precursor to Serotonin in it, and isn't it amazing how it helps? I guess our grandmothers were onto something, weren't they? I know you are right in that I'm just going to have to experiment. I'm always just curious as to what might work for others. Thanks again! Maddie

[SquirmingSusan]

Maddie, I need 8-10 hours of sleep a night or I don't function. But it's very difficult for me to get that much sleep at night. For many years I got up at 3am and went and delivered papers for a couple hours. Then after all that exercise and fresh air, and I had sent the kids off to school, I would fall asleep again and sleep for another 3-5 hours. I liked the split schedule; I didn't wake up as stiff.

Now I've been sleeping straight through from about 2am - 9 or 10. And I usually fall back asleep - I have all the symptoms of narcolepsy, and when I fall back asleep, it's very overwhelming.

So Maddie, I guess you really need to figure out how much sleep you need to feel good, and then work toward getting that sleep. That's definitely easier said than done, and can take some work and a combination of sleep therapies - sleeping pills, melatonin, supplements, hot bath at bedtime, relaxation exercises, hypnosis, etc.

Good luck with it.

[mackjergens]

I found that after walking the floor for over 20 plus years and only sleeping 2-4 hrs each night, that when I finally found something to stop the creepie crawies I still could not sleep. I think it was just the fact that my body was use to being awake during those hours and it was probably a year before I started sleeping longer periods of time, now I usually get 4- 5 straight hours of sleep, and then a bathroom run and eventually get back to sleep most nights. But that is still not the norm for me every night. Many nights after getting up I toss and turn till I finally just get up and stay up anywhere from 4 am to 6am.

But I try not to complain to much to myself as its sooooo much better than it was when I was young. And now that I stay at home I know that I can take a mid morning nap in the recliner. So I just count my blessing!

I honestly think that I will never succeed at having a full 8 hrs of sleep, partly due to rls/meds and just the aging process (61)

[Catfish]

Hey maddielouise1...
What did the dr. suggest for the Klonopin at night? My Neuro said I can take anywhere from .5 to 2 mg as needed, and it really varies from night to night, I guess depending on what I have been up to...
The magic formula that I have found if I want to be dead asleep at night, based on all the meds I have in my cabinet, is actually 1mg of Klonopin and 300mg of Neurontin (moronton). Let me tell you, when I take this combo I am OUT. Whoa...
I can't take the Mirapex, so not really sure what help it would be, but I know the Klonopin works great but have heard it can make you crazy if you stop taking it abruptly... the more you take the longer it will take to ween yourself offa it...

[maddielouise1]

Thank you for all the suggestions and recommendations. I'm still working on it; trying to get some combination where I'm not waking so frequently or waking up at 3:30 and thinking it's time to get up. Catfish, I take .5 Klonopin at night and so far, she hasn't suggested an increase.

[ctravel12]

Hi Maddie I also take mirapex and clonazapem. I believe I posted this prior; however I take 1/2 of the mirapex .125mg around 4 pm and then about an hour before retiring, I take .125mg of mirapex and 1mg of clonazpem.
So far it is working. I do go to sleep right away it staying asleep that I sometimes have problems with. Now last night I just woke up just once and that is great.

Catfish is right about stopping cold turkey on clonazapem as it can make you crazy. Well I did it and I was up walking the floors for seven (7) nights and may of gotten (if that much) one hr of sleep a night and was crying and punching my legs ( I looked like an abused wife). Please do not go off of it cold turkey. In fact you should not go off any meds cold turkey. You should have your dr wean you off of it.

Good luck to you and hope that you find the right meds that will work for you.

Please keep us posted.

[sardsy75]

Hey all

Maddie, as the others have said, clonazepam is one of those meds you just DONT go cold turkey on. I know, I've done it before ... and it aint pretty! Learnt my lesson too!

I'm the same as Susan. I need 8-10 hrs sleep a nite, or i'm just a blithering mess. After all my problems with the change in weather a couple of weeks ago (from very dry to ultra humid & add summertime electrical storms ...yuk!), i'm going through the steps of getting my dear brain back under control. When I had phenomenally bad RLS for months on end a few years ago, I was "surviving" on 2-3 hours sleep a night, and trying to hold down a full time job at the same time. One thing eventually gave way, and it wasnt into sleep, i had to retire from full-time work. It's taken over four years to find a cocktail that finally works (a mix of codiene, clonazepam and amitriptyline, and ropinirole on standby if I do battle with sudden weather changes).

Susan, its a pity we dont live in the same area or we could keep each other company til the wee hour of 2am! That's the time i've been at for the past week. Thankfully the selection of tv shows is still bearable until then, after that it's either throw a dvd movie in, or find a book. Last night i was asleep just after 1am ... woohoo! I'll be stoked when (or should i say "if"?) it gets back to 10 or 11pm.

I am thankful that once I get to sleep, I stay asleep, with sleep studies to prove it. I'm one of the fortunate few who battles with RLS only, and not PLMD as well. As for the time I rise, with my 2am or later "starts", it's not till around 11am. For once in my life i'm glad I DONT have a full-time job right now or i'd have been booted long ago!

Also, if you are finding it hard to relax before going to sleep, there is a natural remedy available: a natural herb called Valerian. It helps to: relieve insomnia, provide relief from disturbed sleep and improve sleep quality. Here in Aussie-land it's available at supermarkets, health food stores and drug stores/pharmacies. It comes in different strengths ranging from 125mg right up to 2000mg. It is recommended that you take it at least an hour before your usual bedtime. Its a natural way of helping you to get to sleep or get back to sleep and does not have any after-effects during the day. BTW, both my ex-hubby and my current partner have had interesting things to say about how much valerian tablets ... smell! No worse than a good dose of penicillan (sp?) i reckon

My RLS is ultra-sensitive to too many dairy products in one go, so i'm unable to have that nice hot cup of milk or hot chocolate before bed. I love reading, so every chance I get, I find a good book (not too good tho, as I've been known to eat a books in one sitting!), and I also have my shower just before bed. Even in summer, I always have a warm shower, not a straight cold one, or i have problems settling down. Meditation is another good way to help you relax, although it does take a while to get used to doing it, especially if your brains telling your legs they'll be painting the town red that night. If you're ultra-wired, try getting a professional massage, or if you have an understanding and willing partner, get them to give you one. I've found that foot massages are heavenly, particularly if you've been adding to the worn paths in your floor.

Sometimes, if I REALLY cant get to, or get back to sleep, I'll ditch the bed and park myself in one of the reclyners in the lounge. If I do end up there I take ear plugs and an eye mask with me as I found that the different sounds you hear in the lounge/rumpus room are quite often very different to those you hear in your bedroom.

As with all things related to RLS (and PLMD) its a case of trial and error, so dont give up. It will work itself out. Stressing (it just makes RLS worse) about it will only cause you more problems.

Hope that all helps and that you get some well earned uninterrupted sleep soon.

((((Hugs)))) to you

[maddielouise1]

Nadia,

Thank you so much for the detailed response, and I regret that I hadn't seen your post earlier. The trial and error continues. I was getting six hours of sleep (but not uninterrupted) and now I'm back to waking up several times, tossing, turning, going into another room to read and going back to sleep for awhile. I had called the doc. a few weeks ago and she said try 50 mg. of Benedryl (with the 1 mg. Mirapex and .5 Klonopin). I remembered that this was a big no-no on the drugs we shouldn't take list, but tried one anyway. As promised, it made the night worse, and I was really surprised she had even recommended it. She really is a great neurologist, actually with epilepsy being one of her biggest strengths (which is what sent me to her in the first place). The RLS/PLMD was discovered with a sleep study she ordered, along with a myriad of other tests. ANYWAY, to make a long story even more arduous for everyone, I called yesterday and explained the Benedryl didn't work and asked now what? She upped the Klonopin to 1 mg. I know as I continue on the Klonopin, if the day comes to go off it, I will have a wonderful journey (ha!), but the sleep was better last night, so I guess I'll see how long this will last. Thank you for all the recommendations for relaxation Nadia!

[djohnso55]

I am also new to RLS. I was taking Requip and think I was augmenting. My family dr. said to stop and start taking Klonopin 1mg untill I see the sleep dr. the end of february. I had a sleep study done that diagnosed me with RLS, but no improvment with the requip, so Family Dr. is sending me to sleep dr. My question also is how much sleep should I expect. I go to sleep,but wake up frequently althought I am able to go back to sleep, I would like to get uninterupted sleep. I have only been on the klonopin for about 3 days and it seems to be a little better. Example I wake up at 12, 2, 3, 5, 6 and then get up at 7. I am wondering if everyone does this. The last two nights I only woke up about 3 times before getting up at 7.

[ViewsAskew]

Lots of us wake up frequently...even on meds. It depends on you, how much you can and are willing to take, etc.

I used to awaken about 30 times a night from the PLMs. Now, I awaken from 2 to 5. Lots better, but I still don't sleep through. If I took different meds, I might be able to sleep through, but for me, that means being too tired the next day as the meds that make me sleep through, like Klonopin, make me a zombie the next day.

Hope the sleep doc helps you. A doc that works with you is worth his or her weight in gold.