RLS LIFE: Drugs, Side Effects & Everything Else

For everything and anything else not covered in the other RLS/WED sections.
Polar Bear
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Postby Polar Bear » Fri Feb 06, 2009 9:21 pm

Glad to see you back Ruby, don't know what you're talking about regarding any 'hard feelings' out there, maybe something went over the top of my head. Anyway... sister.... here's hoping you catch/dodge the curve balls. If you find out how... let me know.

And hey... let us all know.

Nadia, wouldn't it be great to be able to roll with it all each time something else lands on the banquet table ... it ain't so easy. Hence the migraines. Thanks be.... I haven't had any for years, they used to be a torture. My own bag of frozen peas rested in the corner of the freezer, the were great for shaping into the shape of my head, wrapped in a tea towel, and sleeping on them. (or trying to).

Let's hope your rls niggle remained just a niggle and that you have had a decent night's sleep, that your weekend is bright, and your smiles are no longer a facade.

Your appointment with the sleep doc is sooooo important, so take time to work on your 'list'. Of course, thinking about the appointment, making sure not to miss anything to tell sleep doc.... stress.... whoops.... migraine..... its a vicious circle.

Take care girl, Here's wishing you a little less stress. Hard to have no stress with kids... .... but here's hoping.
Betty
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Rubyslipper
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Postby Rubyslipper » Fri Feb 06, 2009 9:28 pm

Sometimes I think I blame stress for too much. I read today (again) about how important a positive attitude is and the importance of laughter. I sat there and thought, that's me. I go into negative overdrive and forget not only to laugh but even to smile. I find myself going home and just wanting to hide under the sheets instead of enjoying all I have. Poor hubby, I'm a different person when around others. We went out to a local "beer joint" (gasp! DID she say BEER?!) with friends and had a wonderful time. That carried me through several days. Proof that I need that fun time and a positive outlook.

Gloom and doom is easy to fall prey to in Feb. for me anyway. Good to hear back from you!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

ViewsAskew
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Postby ViewsAskew » Fri Feb 06, 2009 9:39 pm

it IS too easy to fall prey to those feelings at times! Funny, DH and I have completely different areas where we fall prey, so it's easy to see the other person do it....but not so easy to see (or change) it when it's yourself.

The whole concept of a watcher helps me a lot here (when I remember or allow myself to go there). If I can see myself, even from a corner of my brain, acting this way, sometimes that watcher can say, "huh, interesting" and that's enough of a crack in the woe to allow me to get out of it more quickly.

Ruby, it hurts me to see yourself being hard on yourself, however. You, of all people, have nothing to apologize for. I know we shouldn't compare ourselves, but girl you have a LOT goin' on. I am still amazed at what you do ad accomplish. Since people tell that to me and you put me in the dirt in that regard, what I say is true! 8)
Ann - Take what you need, leave the rest

Managing Your RLS

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Rubyslipper
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Postby Rubyslipper » Fri Feb 06, 2009 9:50 pm

Well, that was a day-brightener! Thanks for the kudos, Ann. (See I can just say thank you and go on!) We all have good days and bad and sometimes I just get down and need a swift kick to get me going again. I have to admit I am my own worst critic and that critic seldom has anything nice to say.

But the weather here has turned off really nice and the week-end is here, only two more hours at work (yes, I am sneaking this at work) and I will be free to get outside a little.

Thanks for the uplifts, friends. Just what I needed.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

ViewsAskew
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Postby ViewsAskew » Fri Feb 06, 2009 11:58 pm

Yes, we have the same lovely warm front...oooooo is it nice. You are probably warmer - you're south and west of me - but hitting 40 today was delicious. Tomorrow? 57!!!!!!!!!! I do not think we broke 32 for at least 6 weeks, with temps usually in the teens and highs in the low 20s. Gosh, it's been a long cold winter.

Enjoy it.
Ann - Take what you need, leave the rest



Managing Your RLS



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sardsy75
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Postby sardsy75 » Sat Feb 14, 2009 8:25 am

Sorry bout bein a slackass.

Ruby ... still love ya heaps xoxo

I fly to Brisbane on Tuesday morning to see my Sleep Dr. I'm a bit befuddled as i've had little or no symptoms for the past week or so; just the migraines. I give up!

I'm taking a girlfriend with me and i'm really going to push to get off the unnecessary paracetamol that comes with the panadeine forte just so I can get the codeine. Even my pharmacist mentioned it to me last week when I was back in there again; and for Him to say something about me being so young and taking so much crap on top of the stuff I need, is something!

We have three printers in this house and not one of them is working ... gotta luv technology! I have an old copy of the algorithm and will be pleading to get off the amit-yada and either onto straight codeine or if no-one wants to go on "the list" for that, then i'm gonna fight for tramal.

I'm not backing down this time. I've got enough on my banquet table without having to worry about doctors who won't listen to their patient.

I'm also going to be asking my Sleep Doc to sign off on a MedicAlert Form which will allow me to have all my medical details put into a National Database and if i'm in a accident or whatever, i'll be wearing a MedicAlert Bracelet which will alert authorities to call the database centre. There's too much medical crap goin on in my life now, to NOT have it.

Best go, theres's a nice big thunderstorm headed our way.
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!!!

ViewsAskew
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Postby ViewsAskew » Sat Feb 14, 2009 10:21 am

You are doing everything you can. In addition to the algorithm, I think there is a study about opioids and RLS. Well, it's really about methadone, but what it demonstrates is that over several years, there were few if any major problems AND the RLS was under control. I just went to look for it and couldn't find it. I'll keep looking.

Nadia, don't know if this would work for you. Did you augment severely? I can't remember. Even if you did, it may be worth it. Long shot, but...one of our oldtimers used to post about experiments with his wife and her using L-tyrosine. Others have tried it and with no results. BUT - it really worked to help me sleep well. It did help my legs some, but it really helped my sleep. I slept better while taking it than while taking anything else I've tried. Problem is that I eventually augmented on it. Just like a dopamine agonist, so I gave it up. Sometimes I really want to take it again anyway. It might not help, but it's inexpensive, easy to find, and may even work!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Postby Polar Bear » Sat Feb 14, 2009 7:50 pm

Nadia, good luck with sleep doc on 17th. I have found the tramadol to help immensely.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Rubyslipper
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Postby Rubyslipper » Sat Feb 14, 2009 11:59 pm

You, my sister, are a fighter. You come from a whole lot of fighters on this board. We are behind you and only wish the very best for you. I think Views is correct in that sometimes we need to go back to simpler things and try them again, especially in the sleep area. Even if they only work for a short while it's worth it to get a few nights sleep.

Let us know what happens.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Polar Bear
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Postby Polar Bear » Wed Feb 18, 2009 12:36 am

Hey Nadia..... Just wondering how you got on at the sleep doc..

Can't wait to hear if you have any specific changes which will hopefully help.
Betty
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sardsy75
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Postby sardsy75 » Wed Feb 18, 2009 10:39 am

Hey Betty :)

Thanks for asking!

Right now, i'm suffering from a MAJOR case of: ... Information Overload.

It's gonna take me a while to process it all.

Quickly on the RLS front ... no change in meds ... hence the sayin "if it ain't broke, don't fix it!".

Don't worry though ... Tramal is in my future ;)
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!!!

ViewsAskew
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Postby ViewsAskew » Wed Feb 18, 2009 10:49 am

Yippee! Can't wait to hear the rest of the news when you've had a chance to process it.
Ann - Take what you need, leave the rest



Managing Your RLS



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sardsy75
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Postby sardsy75 » Thu Feb 19, 2009 10:14 am

Still digesting information ...

HOWEVER

For all those on the ANTI-antidepressant (amityada in particular) bandwagon; here's a lil bit of scientifically proven information from my Sleep Specialist ...

Amityada has LITTLE OR NO EFFECT ON RLS.

Amityada has SOME OR A LOT OF EFFECT ON .... PLMD!

I DO NOT HAVE PLMD. I have pure familial refractory RLS.

So, now y'all can get off your high horses and stop bangin me into the ground about being able to take a high does of amit-yada.

Just coz it says on a website that something will make something else worse, don't mean it's right. I'll take info from a specialist doctor any day over any bit of "ooooo don't take that it makes it worse!!!"

There are numerous things that I have taken for my RLS that are supposedly bad for RLS ... and i've had no problem.

Get used to the fact that i'm at the ultra-extreme end of RLS and if I find somethin that works for me but send the rest of ya nuts, I ain't gonna stop takin it just coz y'all did.

What am I on?

60mg Codeine
125mg - 150mg Amitriptyline
2mg - 3mg Clonazepam

Yes I'm in a bloody good grumpy mood.
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!!!

ViewsAskew
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Postby ViewsAskew » Thu Feb 19, 2009 10:46 am

You sure are in a grumpy mood. :shock:

BUT! I see codeine in that list. Was that there before? I could scroll up and look, but I don't remember you having any narcotics before. If it's new, how is it working? I hate to say this since you're grumpy, dear, but codeine makes my grumpy, lol. I've never taken it for more than a day or two, but I remember taking it at work and then being very short tempered with the other employees.

Now, back to the amiyada...

Not to get your knickers into a twistier twist, but most people simply can't remember everything that's been said, so they repeat things. No one is bangin you in the ground about it!!! They are simply concerned and may not have remembered everything that's been said, especially in a 25 page thread.

BUT, that is a great reminder to people...when you are posting, it does help if you read back a bit and see what's been said. If you post without taking into account what other people have said before you, it can inadvertently hurt people's feelings; they might think you aren't listening or paying attention and that can hurt credibility in the future.

Now, I promise, back to amiyada...

Wondering about her source regarding no problems with RLS but instead with PLM, I turned to the trusty green book about RLS that sits on my desk these days.

"There are no case reports in the literature about the effect of the tricyclic antidepressants and RLS. However, tricyclic drugs (amitriptyline, clomipramine, doxepin, imipramine, trimipramine) increase levels of serotonin similar to he SSRI medications. Anecdotal reports from patients on tricyclic antidepressants have supported their [these drugs] negative effects on RLS. Additionally, there is one report that describes increased PLM with this class of medication." Hening, Buchfurer, and Lee, page 123.

What this tells me is that nobody knows squat in terms of studies. There is ONE study that says this class worsens PLMs and no studies at all of anything else. She's right...but it's not the whole picture. Because there is no picture! There are not enough studies. And, it doesn't mean that it doesn't worsen RLS in people. It just means no one has proven it. There are people here who have reported that it made their RLS much worse. Hazel springs to mind.

The bottom line is always the same. If it works for you, use it. If it doesn't, do not. If it bothers other people, see if something is available that isn't known to bother anyone. If nothing is available, take it with caution and look for issues to crop up knowing what they might be and being on the lookout so you can deal with it quickly. But if there are no issues and it helps, do it. If it could cause dependency and you haven't tried something that won't, try the something that won't first.

For you, amiyada works. That's great. I know your history as do many others. As new people join, they aren't going to. And they will probably, because of the anecdotal reports, say something to try and help you. It will be annoying....but it will have been done with care and concern.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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woodsie357
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Postby woodsie357 » Thu Feb 19, 2009 3:07 pm

Amitriptyline was one of the first drugs that I was given that worked. It worked well actually. I gained tons of weight though, as well as making me very moody. I had to stop taking it. I've also been on zoloft, lexapro, prozac. Those three for me made it soooo much worse. We are all so individual on what works for us. I just love hearing when something works from someone! It makes me very very happy. No one wants anyone to have to suffer with RLS, or PLM

best wishes to you all
Someone cares about your sleepless nights


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