Something for you but anything for me?

For everything and anything else not covered in the other RLS sections.
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tomkay
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Joined: Thu Apr 09, 2009 3:57 pm
Location: England

Something for you but anything for me?

Post by tomkay »

I'm new to this place so thought I'd start by contributing :)

I have found the following work or have worked:

- Cutting out all caffeine.
- Cutting out all sugar.
- In bed, sit cross legged, slump backwards and stay like that whilst I read until I'm ready for sleep. It's not comfortable so when it comes to straightening my legs it's bliss.
- Magnesium.
- Valerian.
- Syndol (an over the counter pain killer). It contains codeine but it's the Doxylamine Succinate that does it.
- Acupuncture electrodes - great if you can find the point!
- Scratching the skin. This works for arms and legs.
- Massage.

About a month ago my doctor put me on Requip. It worked for a while but when I increased the dose the side effects kicked in. I took myself off it pretty quickly.

My problem is that even if I get off to sleep I'm not reaching that restorative sleep because of leg movements. I often wonder how fabulous I could be if only I had more energy. Prime Minister? Concert pianist? If I could only get some good quality sleep then...
Kicking my legs in bed like a beached and disorientated snorkeler.

Neco
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Post by Neco »

If you are dealing with your symptoms OK and are purely concerned about the PLMD disrupting resotrative sleep then a medication like Clonazepam would be something to ask your doctor about.

I believe the Mayo Algorithm also discusses PLMD, so you might want to click the link in my signature and give it a good read.. You could also take it to your doctor and ask if there is anything they would like to try, since there are MANY alternatives to requip, all covered in the algorithm

SquirmingSusan
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Post by SquirmingSusan »

Welcome to the forum, Tomkay. Thanks for letting us know about things that work for you. I sometimes wonder, as well, what I could become if I could get a decent night's rest. But then I wake up. :shock:
Susan

dogeyed
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Joined: Wed Apr 21, 2004 3:06 pm

Post by dogeyed »

Hi TomKay,
I got another item to add to your list, for when you go to sleep. Put on some support stockings or compression socks, the tightness they put on the leg muscles makes them slow down and quit seizing just long enough to fall asleep.

I'm assuming you're from the United Kingdom, becuz in the US, they don't sell codeine over the counter. If that medicine really does have codeine in it, by golly, that is actually one of the best types of drugs to make RLS stop. Another tip is you can put a heating pad on your legs when you're resting, that helps the aching a lot.

Well, welcome to the club, this is a good place to get some comfort whilst you drag around half-dead from RLS keeping you up all night.
GG
"It's not how old you are; it's how awful you feel."

4everinmotion
Posts: 3
Joined: Thu Apr 16, 2009 1:53 pm
Location: Austin, TX

Hey Tomkay-

Post by 4everinmotion »

I second the compression stockings AND the clonazepam..
I was on clonazepam for years, and never got a better night's sleep. The reason I had to quit recently was due to a long term side effect which aggravates my MS symptoms. Otherwise I would still be sleeping every night.
I've worn compression stockings at night since I was a teenager. I just knew it stopped the jumpy legs even though no one knew what it was.javascript:emoticon(':roll:')

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tomkay
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Location: England

Post by tomkay »

dogeyed wrote:If that medicine really does have codeine in it, by golly, that is actually one of the best types of drugs to make RLS stop.


I actually found the codeine didn't do much for me. Until recently I was living in Poland where you can buy really strong codeine and found it didn't work. I just felt really floaty. It's the Doxylamine Succinate that really does the trick. 20 mins after taking them and I'm out like a light.

Thanks for the suggestion about the stockings. I'll check that out....NOW!
Kicking my legs in bed like a beached and disorientated snorkeler.

sardsy75
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Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Post by sardsy75 »

dogeyed wrote:I'm assuming you're from the United Kingdom, becuz in the US, they don't sell codeine over the counter. If that medicine really does have codeine in it, by golly, that is actually one of the best types of drugs to make RLS stop.


Hey Dogeyed,

So, if i've read your post correctly, you're saying that in the U.S. that you can't buy ANY medications "over the counter" at a pharmacy that contain codeine?

Cripes, i'm glad i'm in Australia! There's a stack of OTC painkillers that contain codeine available upon request to the pharmacist. Granted they're mixed with paracetamol, ibuprofen or asprin, and the codeine amount varies from 8mg to nearly 13mg per tablet, but they're a godsend when you're in a pickle and unable to get to your emergency stash!

I'd be lost if I couldn't supplement my prescribed codeine with the OTC stuff. Yes, I keep a diary of every extra non-gp/specialist-prescribed codeine that I take.

I knew the U.S. had strict drug controls but that's just ludicrous!

Oh yeah ... Clonazepam ... been on it for a few years now ... had to detox off of it in '06 (was on 5mg) but am cruisin along on 3mg/night now.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

Neco
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Post by Neco »

No, we can't buy OTC codeine preps.. Not even the wimpy 8mg preparations.

BUT if you are in a border state, you can drive North to Canada and buy some across the border, and legally bring it into the country.. I guess as long as you don't buy like a case of the stuff, lol.

Anyway..

Be careful with doxylamine. It's an anticholinergic (a.k.a antihistamine), and I can tell you from experience you WILL hallicinate if you take enough, and also most people tend not to experiment with them because it is so easy to O.D on them. Personally throw some cough syrup ontop of my Methadone and it really smooths out the duration and also gives it a little kick as far as sedation / buzzing goes.

Nothing worth writing home about.. But very relaxing. Although recently I've switched to buying dextromethorphan-only cold meds. The other crap is no good (especially acetaminophen) and really its the DXM that does it for opiates. It's really helped me keep my overall dose down, and I've only had one dose increase since I began taking Methadone, so I feel its really helped.

Doxylamine is notable for sedation, so just don't overdo it because you hit a wall of tolerance and want to keep taking more.

Neco
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Post by Neco »

Also, if you want the doxylamine.. just go buy some Unisom. That's pretty much what's in it.

sardsy75
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Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Post by sardsy75 »

Hey Zach

First up ... good to hear that you have been able to stablise your Meth dosage. You've been through some tough times, but have come out the other end in one piece :)

Totally hear ya on the doxylamine. It's in one of the OTC Codeine preps here in Australia.

After my RLS came out of "remission" in 2003 it took a few weeks to realise that it was the doxy that was driving me insane. That particular prep has paracetamol, codeine and doxy.

I've managed to stay at a stable 60mg/day of codeine for well over a year and only take extra if my fibro or costochondritis decide they want a piece of the action. I have to keep a diary of ALL extra codeine I take to keep my Sleep Doc and GP happy ... e.g. by the end of next week i will have gone through 60 days worth of Codeine in 51 days but am able to account for the other 18 Codeine tablets date by date and reason by reason. As long as it keeps both my Dr's happy, then I'm happy.

Take care all
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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