Know Your Meds

[tunesmith]

I've been following this site since the beginning, but I've never posted. So, I've decided that it's time to come out of the ether and say hello to everyone. I've always enjoyed reading what people have to say, so it's probably my turn to contribute.

A bit of background: I have had severe RLS for over thirty years and I've been learning about it and trying to treat it for just as long. My RLS journey has had many milestones, like yours. But the most powerful and memorable moment for me was the day I found out what it was called and that others had it, too! I wept at that knowledge. Over 20 years ago.

In those days (mid 80's), they treated RLS with anti depressants. I wouldn't take it because I wasn't depressed. Then they found out that anti depressants actually exacerbated RLS. Boy, I was glad I hadn't fallen for that one.

Then, in '93, another specialist-of-the-day pronounced that "yes, indeed you have RLS" and marched me out the door with a prescription for Sinemet, a Parkinson's Disease drug. I was wary. His assistant handed me a copy of Nightwalkers and gave me an address in Florida where I could contact others. We had a magazine? I was stunned.

I took the Sinemet script to the druggist and asked what the side-effects were and he said "What does it matter, Parkinson's is a terminal disease." In spite of that line, I filled the prescription, but I never took the pill. Now, I regularly read about people with "sinemet legs", which is basically RLS 24 hours a day.

Boy, I was glad I hadn't fallen for that one, either.

But, during all this time, I was suffering enormously. Sure, I hadn't taken the front line meds-of-the-day, but I was still suffering. I tried TCM, homeopathy, acupuncture, herbs, minerals, massage. Nothing helped. Bedtime was the most dreaded time of the day.

Then, in 2000, I discovered Dr. B's site. Simply, I can say that his site changed my life. Not only were there tons of letters to read (along with his responses), but a complete array of meds used to treat RLS.

After lots of research and discussion, in 2001, my PCP and I decided to try the path of opioids. Finally, here was something that worked! I've been on it ever since - pure oxycodone with no acetamenophen or aspirin. I read that taking that stuff was hard on the liver and it doesn't help RLS, so why take it.

And to keep myself in line, I'm a regular reader of a forum for opiate abusers. In following that site, I see how quickly and easily things can get out of hand with these drugs. It's filled with good information and wonderful, thoughtful people. And, as I said, it keeps me in line. As well, my PCP has me visit with a chronic pain specialist/neurologist every year to make sure all is well with my Rx. I'm feeling looked after and understood.

To balance the opioids, I take an extensive regime of vitamins, minerals and oils. I have no side effects to speak of. I haven't stayed at the same dose all these years because tolerance does occur.

If you are suffering chronic debilitating RLS, I encourage you to find a PCP who will work with you in finding what works for you. Then, it's up to you to inform yourself about the drugs you are putting into your body.

A few days ago, I read the words "respect your drugs" in this forum. I couldn't agree more.

Thanks for reading this long first post. If I post again, I promise to be brief!

tunesmith

[ViewsAskew]

Hey, tunesmith! I love it when people jump out of the ether. Glad you decided to post. And, don't worry about the length of this...or future ones.

[tunesmith]

Thanks for saying hello!

It's interesting how many of us are out here, reading and researching, yet rarely checking in. That's the beauty of it, though. I've learned so much from people I've never seen. I appreciate people who put their thoughts on this forum for others to read.

BTW, is there further fallout over the Consumer Report's sarcastic take on RLS? Where's that being discussed?

tunesmith

[mackjergens]

Hi tunesmith,
I enjoyed your post and you are so right. The most important thing in trying to find something to control your rls is first to become educated with all the pros/cons of rls and meds used to treat it.

I know that I probably saved myself alot of extra misery by reading and knowing meds what are known to make rls worse, and as I posted here before I was able to say NO thanks to blood pressure meds when it was discovered that I had High blood pressure, I knew what med I wanted to take for my high b/p because I had read and educated myself and knew that many meds for high b/p will make rls worse, but that clonidine/catapres is known to actually help rls, so of course I ask to take the clonidine. That is just one example that I have been able to help myself. Like you I have never tried the Parkinson meds, because of reading so many things about those meds, I also take pain meds for rls and they work great for me. I am lucky that my Drs will prescribe them, and I know that many people cant convience their drs its a good drug for RLS.

Like you I also suffered over 20 yrs before finding a Dr and a med to control my rls, just knowing how hard it is for Drs to prescribe pain meds, keeps me on the straight and narrow with my hydrocodone. I live in fear if I ask for more or a stronger dose he will not refill it for me, so that fear keeps me very grounded with pain meds. I NEVER want to go back to walking the floor every single night! I actually will not take any meds everyonce in while just to keep the dose down. I live in fear that this med will stop working for me, but so far its been around 8 yrs, of taking this and Ultram/Tramadol which I rotate, and that also keeps me from taking more hydrocodone.

You are so right when you say Educating yourself about RLS is the KEY to finding something that will control your rls.

[tunesmith]

Hi mackjergens,

Thanks for replying.

I wish I could do the alternating thing with Tramadol like you do, but it's not available in Canada. I remember asking my doc about it when we first started this path because it's a method Dr. B recommends. No such luck here, though.

I'm glad you've got a healthy sense of the power of these meds. And, I agree, we don't ever want them to stop working! I'm a six years and they're still working great with no side effects... touch wood. I'm glad to hear of your success because it empowers me.

Although being in Canada stops my Tramadol access, (so no drug holidays for me), I'm glad to know that our government doesn't go after doctors who treat rls with pain meds like what I read happens in the US. My PCP is pretty fearless about Rxing for me, and he doesn't have a reputation of being a pill-pusher. He knows that this works for me, so let's do it. We've talked often about Parkinson's meds and he believes they can play havoc with your mind, so he doesn't want to Rx them. He's right because you can read evidence of it all over this forum.

The medical establishment has lots of experience with pain meds and they know that in their pure form, Rxed properly, they don't hurt you over the long term. I'm sorry that it's so difficult in the US to get doctors to prescribe pain meds for rls because of their fear of the DEA. I agree with you, if you find a doc who'll work with you, then stay on the straight and narrow and you can find relief in the long term.

tunesmith

[ctravel12]

Hi Tunesmith and welcome to this board. I thoroughly enjoyed reading your post and it so wonderful that you educated yourself as well as you did. Am also glad that you finally found the med that is working for your rls.

Never apologize for a long post. We learn from each other. Welcome again and hope to hear from you again.

[Sojourner]

T, Just wanted to say hello and add another "welcome." It's so good to hear of success stories--both in how your med regimen works for you but also in how your doc approaches your needs. Best wishes for continued good luck in the future and Happy Thanksgiving.

M>

[ViewsAskew]

TS - the Consumer Report thread is in the .... General section, I think. Yep, General, Non-RLS, here it is http://bb.rls.org/viewtopic.php?t=5405 .

[Walking After Midnight]

Tunesmith...
Thanks for your post. It's always good to read about someone having success managing their RLS.

Good advice and good words of wisdom.
Here's to reading future posts by Tunesmith.

Randy

[tunesmith]

Thanks for the warm welcome, folks.

Although my RLS is under control, I still don't sleep much. I'm up anywhere from 5-7 times per night. Usually to raid the fridge (heh heh). I take zopiclone to help with sleep, but I usually don't fall asleep immediately no matter how tired I am. I'm usually up about 20-30 minutes after going to bed. I used to pace the floor incessantly, but now I'm just up for 20 minutes then back to bed only to be awakened 30 minutes later. This goes on for the whole night. My best sleep starts at after 4 am.

Recently, I've been taking high doses of magnesium glycinate (1200 mgs) and although it helps with leg cramps and feet aches, it doesn't help with sleep.

Yet, all my friends and family tell me that I always look well rested even though I have this insidious disorder. So, I guess I'm lucky on that front.

Do others experience lots of night awakenings even though they have their RLS under control? Any idea why that is? And what about night eating? Do others eat when they awaken at night? I've always wondered if RLS and NES (night eating syndrome) are connected. I've had both my whole life it seems, though it's the RLS that has caused the most suffering. I've self-diagnosed the NES after lots of research and discussed it with my PCP, but because I'm not overweight, he doesn't worry about it.

Thoughts?

tunesmith

[SquirmingSusan]

Hi Tunesmith, I also take zopiclone/Lunesta to get to sleep and it takes about an hour for it to work. During that hour I get ridiculously dizzy and develop a severe case of the munchies. So I stagger around getting things to munch on until I get sleepy enough to lie down and go to sleep.

So the night eating just might be the zopiclone. I've never heard of anyone else having that happen beside myself with that med.

[jiggyanne]

Hi tunesmith,

I, too had had RLS for years and years. My whole family has had it and we even called it that name. Now, my kids have it and it's beginning to show up in my grandchildren.

I had been taking Vicodin along with my Requip and that helped some. I was nervous about taking it because I didn't want to get addicted. I do have a lot of arthritic pain so that does help THAT. I found if I didn't take it every night, but only the nights I needed it, I don't seem to be addicted. I recently found Klonopin to help. A lot! I was getting "used" to the Requip and I'm already up to 2mg a night and it really wasn't working much anymore. I remembered I had some Klonopin that the doc had prescribed to help me sleep, but I had forgotten about it. I tried it along with the Requip and I slept like a baby! Two nights in a row!

Anne

[tunesmith]

Hi Anne,

Nice to hear from you! And so glad to hear that you are sleeping.

No doubt it's hereditary. When I was a kid, my grandfather was always moanin' about "me legs, me legs." I really felt sorry him and now I've got it, too.

It's good that you're using the Vicodin only as you need it, so you won't become dependent on it. That didn't work for me, so I have to take it every day.

There's a big difference between dependence and addiction. Addiction is when you start taking more than you need, taking it for the buzz, always running out early and looking for other sources.

You obviously have a healthy respect for the drug and that's good. You'll never become addicted the way you're using it.

Klonopin used to be a "drug of choice" for RLS, so I understand why you want to use it. Careful, though. It's a benzo with a 35-40 hour half-life (the length of time it takes to clear your body) and benzo's can be a worse addicting drug than opiates. Harder to get off them.

If you use it only when you need it, you'll be OK.

There's a great site called <benzo.org.uk> that talks about benzos and their long-term affect on the body. I'm not meaning to worry you, nor diminish your success with them. My mother has been taking .5mg Klonopin every night for years and she has found it to be a god send.

Personal education is the key. It's good that you've found a cocktail that works for you. Keep reading and researching. You'll be a source of knowledge for all your family with RLS.

Take care, Anne!

tunes

[jiggyanne]

Thanks Tunes, for your insight. I think that's exactly what I've been doing. I know my doctor is not worried and he knows me very well (I got a good one!) The Klonopin I'm taking is 2mg. I'm known for being drug resistant. It takes a lot to knock me out. I once woke up in the middle of a hip replacement. That freaked the doctor out a little!

Since taking those two doses, last night and the night before, I haven't had any episodes yet and it's past 8:00 PM. Normally, I would have been doing a dance an hour ago. I really hope this is the answer. I will talk to my doctor tomorrow and make sure it's the right thing.

Anne

[ctravel12]

Hi Tunesmith and Anne. Do not know if I welcomed either one of you to this group, if not, please welcome.

I am glad that you are finding relief for your rls. Tunesmith sorry about your sleep habit and hope that you find relief for it.

I take 1mg of clonazapem and .125mg of mirapex and so far both is working good. I have not been sleeping too good lately;however the last couple of nights I feel I am doing better. I hope that it continues. Do not want to say it too loud LOL.

Take care and have a nice evening.