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New to the board - really suffering - please help

Posted: Sat Jun 27, 2009 6:02 am
by clarkgriswald
Dear RLS board,

I'm new to the board. It's great to be here because I feel like there is hope here.

I have had sleep problems my entire life. In college the sleep problems became severe. I was diagnosed with RLS and myoclonus. After two years of trying everthing under the sun we learned that Percocet and ativan worked well. That was ten years ago. I've also had trouble with depresion and I got that under control at the same time. The sleep problems and depression were so bad I had to drop out of graduate school.

Six months ago, it simply stopped working. I've been going through hell. I've worked really hard and have a great job. The rls is destroying my ability to work. I can't stand the sleep deprivation. I've lost my short term memory. I can't concentrate. My temper is really bad.

Here are my current meds:

1.5 pills of 7.5/325 percocet every night
1 mg of ativan every night
wellbutrin in the morning for depression
Zeprexa at night when I need it

Why after so much time would it stop working so suddenly? Some nights I just wake up early and can't get back to sleep. Some nights I'm in this half sleep that isn't even restfull. Every night I have trouble getting to sleep. And about 80% of the nights at about 4:00am I wake up with the most severe rls. I can take more percocet at 4:00am and by 5:00pm I'm back asleep. But it leaves me hung over. I really need my brain in the morning.

Yoga helps, but when I'm so sleep deprived. I've also been trying omega 3. I'm not sure if it helps.

Any help would be appreciated. I'm trying to isolate variables (sugar, the wellbutrin) but nothing is jumping out.

Thank you!!!

Posted: Sat Jun 27, 2009 6:17 am
by Polar Bear
Welcome to the rls forum. Sorry you are suffering and the sleep deprivation just exacerbates everything. I don't have anything to offer with regard to your meds, and sleep, I'm not knowledgable enough but wanted to say Hello. I take requip and tramadol for the rls, with Ambien as needed to help with sleep. This regime is sometimes ok, and sometimes very much not ok but never brilliant. Others will come along with good advice for you.

I would suggest you take a look at the Mayo Algorithm, it is really good for information for you and your doc. There is a link at the bottom of Zach's posts. And Zach is excellent when it comes to medication advice.

Posted: Sat Jun 27, 2009 6:50 am
by SquirmingSusan
Hello, and welcome to the forum. Is there anything in your life that changed 6 months ago, or any new meds that you started to take? How long have you been taking the Zyprexa? That's a medication that can worsen RLS. You're on a relatively low dose of the oxycodone. Is there a possibility of increasing the dose or switching to an extended release version? Or even switch to a longer acting opioid like methadone, which many of us take and find to be helpful without too many cognitive side effects. Wellbutrin is one of a few antidepressants that doesn't have a big possibility of worsening the RLS, and in fact, it sometimes helps.

Your best bet is to get educated. Read the sticky posts at the top of this part of the message board on getting started with treating RLS. It sounds like you have a helpful doctor who has helped you sort this all out before. You'll want to make an appointment and discuss your options.

Posted: Sun Jun 28, 2009 2:15 am
by clarkgriswald
Thank you Susan and Polar Bear. I can't think of anything that's changed in the last six months. Tons of stress maybe. I've started looking at all the great info on the site.


Posted: Sun Jun 28, 2009 2:50 am
by mackjergens
First I would stop the Zeprexa, its an antihistime and just about all those will increase rls. Try taking Claritin (reg, not the D). I would try this first thing, I think you will find your rls to be better controlled. if not I would increase the persocet and if that helps I would call my dr and explain that the 1/1/2 pill is no longer controling you rls. Request an increase in the percoset, since you have been on this a long time, I doubt if your Dr would object to increasing by 1/2 extra table. Because it could be your body has become adjusted to that amount and now will require more.

Please read all you can about rls, know the meds that can and usually do increase rls, and the foods known to make it worse, the more you read and educate yourself, the better you will handle the rls.
good luck and keep us posted to how things are going.

Posted: Sun Jun 28, 2009 6:20 am
by SquirmingSusan
Actually, do not EVER stop a psychiatric medication (Zyprexa) without talking with your doctor. Our guru doctor, Dr. B ( recommends that, if the medication does cause worsening of RLS, to cover the worsening with additional RLS medication. It doesn't sound like it's the culprit, anyway, if you've been taking it all along. Getting your RLS under control may be as simple as raising your Percocet dose.

Posted: Sun Jun 28, 2009 5:09 pm
by Neco
The best thing you can do is let your doctor know that the medication is no longer working.. I would think after 10 years of the same dose of Percocet they wouldn't (hopefully) make too much of a fuss about increasing it.

If you require these other medications the best thing to do is to raise the dose of your Percocet to a more acceptable level. You are on a relatively low dose from what I can tell, and its pretty amazing that you got 10 years of relief out of it.

There are concerns with Percocet and other painkillers which also include Acetaminophen, as the dose goes up. However the opiate in Percocet, Oxycodone can be prescribed (under that name) with no additional additives like the acetaminophen. Although 7.5/325 is a relatively low amount of acetaminophen anyway so a change may not be needed aside from the dose increase.

Also try to take note of what time a day (or night) it is getting worse, if you can tell a difference.. As single dose treatments can lose effectiveness over time.. Many of us here take our meds in small doses two or 3 times a day.

Posted: Mon Jun 29, 2009 2:21 am
by ViewsAskew
CG - as you can tell, we all have opinions here. It may seem that they are saying different things, but mostly it's all the same.

Here's my perspective on antidepressants. For a long time, we would hear horror stories about people taking them and having horrid increased (or even new, but bad) RLS. We pretty much got used to saying - Oh No! Antidepressants are bad. Recent studies show that they do indeed make some people's RLS worse (or can cause it), but that percentage is relatively low - from about 5% to 25% based on the antidepressant (or ADs), if I remember correctly (or IIRC).

So, the bottom line is this: some of us just need an AD, for whatever reason. If it's not so necessary, it may be worth stopping it to see what happens. If you know you need it and especially if you've tried others, then take it and increase the RLS drugs to cover the new symptoms.

Per the Percocet, 10 years is a very, very long time at the same dose. Your RLS simply could have gotten worse. We don't want that to happen, but it does. You know opiates work. Now you might be able to play around a bit and find the lowest dose you can take, using an opioid that helps you the most and that doesn't cause other problems. The acetiminiphen is a bit of an issue in the sense that it's not helping the RLS in any way. It's just in your body, in your liver, when it's not needed. So taking it doesn't help the way it would help if you had pain of some kind.

I imagine someone had recommended the algorithm by now. It's in Zach's signature and if you take the link in my signature, you'll also get to it. As Zach said, just talk to your doc. I can't imagine him or her not helping you. Take the algorithm in. Look it over together. Work as a team and find the best way to help you.

Suffering is awful and it probably isn't necessary - it seems to me that there are options for you and you'll be OK again. Let's hope it's another 10 years before the next change is needed.

Hope you are having an OK weekend and that you had some relief.

Posted: Mon Jun 29, 2009 6:36 pm
by clarkgriswald
Thank you fellow RLSers. I spoke with my doctor. He said I could increase the Percocet to 2.5 pills a night if I needed it. Because I kept waking up at roughly the same time with pain, I took the advice given to me here and spread out the dose. I took one pill right before I went to sleep and then one when I woke up with the pain. It worked really well last night. My doctor agreed that 10 years is a long time to go without increasing the dose. I only take Zyprexa on an as needed basis. He said because I don't take it every night it's ok to simply stop taking it. But he said it would be good to see if it actually makes the RLS worse. He's always told me RLS triggers can be very unique to the person who has it.

I am concerned about the acetaminophen in Percocet. The next time I see my doctor I'll ask him about it.

I've started to really educate myself with all the great resources here. The two worst things for me are alcohol and aspartame. Both of them send my RLS through the roof. Even one stick of gum with aspartame can do it.

I'm lucky to have my sleep doctor. My primary care just stares blankly at me when I talk about my RLS.

Posted: Mon Jun 29, 2009 11:26 pm
by mackjergens
hmmm sorry I should have ckd what type med Zyprexa was, but didnt as you said it was antihistime. But glad to hear that you could stop taking it for a little while to see if its causing an increase in your rls. IMHO I would stopped it for afew days, just to make sure its not making rls worse, and especially since your Dr said it would be ok. I think if you research antidepressants and rls you will see that most but not all rlsers are affected by antidepressants. But as we all know each person is different and so we must ck these things for ourselves. but always ck with your dr first.

Posted: Tue Jun 30, 2009 5:09 am
by SquirmingSusan
Wow, it sounds like you have a really great doctor, who gets you in when you need to be seen, and will do what it takes to treat you. Would you be willing to tell us where you live so that, if someone is in your area and needs a doctor, they can contact you?

BTW, according to most of the drug reference sites, you can safely take up to 4000 mg of acetaminophen a day; less if you drink alcohol or have liver damage. I doubt you're anywhere near close to that limit. But it's always good to ask a doctor or a pharmacist.

Posted: Tue Jun 30, 2009 2:12 pm
by Neco
325 x 2.5 = 812.5mg acetaminophen daily.

That's perfectly fine.. I wouldn't worry unless you require such an increase in the future, that you would be taking 3000mg acetaminophen or more daily.

Posted: Wed Jul 01, 2009 12:36 am
by clarkgriswald
I'm in Los Angeles. My doctor is a great guy. He really cares. I see I can update my profile to show my location, which I will do now.