And, now my turn

For everything and anything else not covered in the other RLS sections.
ViewsAskew
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Post by ViewsAskew »

doety wrote:Ann, thanks for the thoughtful answer. I cut and paste and will save it for the time my daughter might need to see it. I remember being where she is -- some sleep disruption, but not really enough to be serious -- or that's what I'm picking up. She did the same thing I did during pregnancy -- not sleep at all until about 6 in the morning. She has 10 years before menopause, which was the critical time for me -- no sleep at all during the night and I was too old to bounce back. That's when I went begging for drugs.

I know I'm not doing the right thing -- I'm sleeping, but waking up groggy. I had forgotten how powerful Mirapex is, even with the lowest dose cut in half. Tonight I think I'll try 1/2 Mirapex and only 10 mg of Methadone and see how that works. I can't see the doc until Dec. 28, so I'm winging it.


I hope the cut dose of methadone works. I could always cut my dose by about half when I would try Mirapex. That is until it quit working and then I needed the all of it. Or try cutting just one out and see.
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.

ViewsAskew
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Post by ViewsAskew »

I've been too unhappy to update. Really, things are better so I shouldn't be so negative. But, there are still problems and there is no clear path to take. In a recent email I had asked about combining opioids and he said that wasn't normally done for RLS (the RLS docs don't have much experience here). He followed up by saying, but since you don't seem to respond as other people do, we'll have to throw out the book and just see what works best.

That's good, right? He's there, he's hanging in with me. He's willing to try things that aren't usually done.

That's also bad. It means more being a guinea pig. I'm soooooo tired of being a guinea pig. As I know many of you are, too.

The levorphanol works, but I have to take it more frequently than I'm supposed to. And, I get these nasty headaches. I think I've somewhat figured them out. Some opioids make me clench my jaw - this one does. The clenching tightens my muscles and creates an incredible tension headache. When sleeping poorly, I get trigger points in my shoulders. These headaches are also setting off trigger points. So, I wake up each day feeling like my whole back, shoulder and head is one big painful knot.

This week has been the worst. I've had to use multiple hot baths, heating pads, and massage to get the trigger points to release to I don't hurt so much.

Because it hurt so much, I used the tramadol/Mirapex combo 4 days in a row and took a teensy bit more Mirapex the last two nights because I was getting too much breakthrough. I slept poorly and awakened early with RLS. It progressed into the most nasty daytime RLS....can I say augmentation?

CRAP!

The levorphanol works, but causes other problems. The drugs I take for a break from it are now causing problems, too.

Yeesh.

This afternoon after spending a couple hours pacing, I decided to take 5 mg methadone at 1 PM to see what would happen - it's now been about a month, I think, since I stopped it. After about 90 minutes, I was able to fall asleep for two hours, getting up at 4:30 PM. The RLS started again by about 5:30, I think. Not much relief in terms of time, but I did sleep and that's encouraging. I think I'll try 10 mg right now and see what it does.
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.

doety
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possible?

Post by doety »

I'm afraid to even say this, but what the hell. We all know there's a psychological component to RLS. Why else would I be psychotic on an airplane, then walk off and be fine? Sometimes, when I'm in the kind of state you're in (and I know it well), I almost stop myself from getting sleep because I feel hopeless. If I keep trying to lay down, every once in a while, I actually go to sleep. I've decided not to feel guilty about not sleeping with my husband -- getting sleep is too important. Sometimes I "go to sleep" in our bed, then get up immediately and come in the den. Even tho every sleep hygiene book tells you not to, I turn on the TV, something like Law and Order that i've seen before and I've been known to get a solid four hours sleep -- unbelievable! Anyway, I'm sure you've tried all that. I have an appt tomorrow with a new doc; should be interesting. I've just heard he listens, don't know his experience with RLS. We'll see. Christmas was awful, we were in the mountains and going up 2,000 feet always screws up any sleep I'm getting. I did all those things -- mopping, polishing, carting out garbage, etc. You know! I dream about a magic oil I could drink and it would go through my body and make me peaceful. And for you, too!

ViewsAskew
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Post by ViewsAskew »

No question there is a huge psychological component. When the RLS is strong, my anxiety level is through the roof!!!!

I was reading a loooooong post about trigger points. The author mentioned something about bioenergetic breathing and round breathing. Soon I was on the Cassiopaea Forum/Eíriú-Eolas site trying pipe breathing.

It was very similar to breathing I'd done when taking Tai Chi classes. I was amazed at how my level of stress and anxiety plummeted (and my RLS did not get worse). It sort of centered me alertly if that makes any sense. I was awake, but calm.

And, tonight, even though the 10 mg of methadone only worked for about 5 hours (I used to get 12 out of one dose) and the RLS started again, I feel much better, less anxious, more centered. Staying that way is key, I think, to managing these horrid periods. It's so hard to remember to do the things that help when you're in the middle of it. Also, since meditation is out for me now (it does make my RLS crazy), finding things like this breathing exercise is so important. It gives me a way to keep the RLS from taking complete control of my emotions and life.
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.

Betty/WV
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re: breathing exercises

Post by Betty/WV »

Hi Viewsaskew: Interesting post about the breathing exercises. I would like to know more about it. Could you let me know where to find information, or explain how to do it. I need something to help with my anxiety. As you can see I'm up at 3 am. Thanks ahead of time. I would appreciate hearing about this.

Hope you find relief VERY SOON.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

ViewsAskew
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Post by ViewsAskew »

Will try to remember to post the breathing in a separate thread of its own.

I'm very worried this morning....I took 10 mg methadone at 6 PM, then 10 more at 1 AM. That should have held me for 24 hours. At 6 AM, I was awakened by RLS in my arms. I hate RLS in my arms. It's only in my arms when I'm augmented.

So, seems that now I'm dealing with worsened RLS on top of tolerance to opioids, and opioids are what I would normally use to counteract the worsened RLS.

Time to try pipe breathing before I totally freak out.
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.

cornelia

Post by cornelia »

I spoke today with the head of my pharmacy and asked him about opioid rotation and if it will work. He says it does and told me that rotation (in my case) between OxyContin and methadon could work well (no guarantee of course). He says it can slow down the progress of taking higher doses of the same opiate again and again, but eventually with rotation that will happen too, but, as I said, in a much slower rate.

Corrie

doety
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rotation

Post by doety »

Ann, I forgot to say yesterday that my new doc said rotation is sometimes the answer. I'm always so grateful when it sounds like they're keeping up on things. I got such wacky results when I dipped into the Mirapex (1/2 of a .125 pill) that I didn't try it again. I do remember when I first took it about 3 years ago that I had to fight through the headaches, etc. until finally it worked -- and worked well for two years. God, what I'd give for that again. Methadone is enticing because when we first took it, it worked well, no weird side effects, just blissful sleep! But the doc said yes, it could augment, like almost everything else. Here we go, marching into the unknown again.... :(

ViewsAskew
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Post by ViewsAskew »

Corrie, I think that's very promising. Since opioid therapy is relatively new to RLS in terms of many people using it, it will take awhile before RLS docs
"get" what to do regarding it and know that you can do things like this. I've been thinking Oxy might be a good next choice.

Doety, I have never heard of augmentation in the strict sense regarding anything except the dopamine agonists and a few cases in tramadol. I think it's more likely that it's simply tolerance and that some of us have a greater propensity for it.
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Post by Polar Bear »

Ann, you are being thoroughly tested at present, both physically and emotionally. It is so unfair that no matter how well versed one is (as you are) bottom line is that ' nothing works all of the time for all of the people '.

A few words, the meaning of which, have brought most of us to the edge of reason/despair at one time or another.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Post by ViewsAskew »

PB, you got that right. I have lots of wishes - from finding an underwire bra that doesn't pinch to a lasting Middle East accord - but I really, really wish that we soon find the cause of RLS so that we can create a real solution. One that actually targets the cause.

That would make me a happy person.

On another note, I am thrilled that the levorphanol works, particularly because the methadone completely does not. But, these headaches are going to be the end of me. I am spending my days massaging my neck and shoulders, trying to relieve trigger points, doing pipe breathing...all do thwart these things. It is helping, but not completely resolving them. I wonder if I put a sock in my mouth if it would keep me from clenching my jaw? It would certainly shut me up!
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.

SquirmingSusan
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Post by SquirmingSusan »

I'm a jaw clencher, and those headaches can make me cry. There are two solutions that work for me to some extent. The first is to take a cork from a wine bottle, and stick it between your teeth for a while. The second is to invest in a mouth guard - you can get them at the drug store for about $30, or you can get one in the sports section of a discount store, like Target, for less than $10. They are identical. I picked up up at K-Mart on clearance a couple weeks ago for $1.50. I've also wondered if just chewing gum might help as well.

Can't help you with lasting peace in the middle east, but the Bali no-poke underwires are really comfortable. Until the wire breaks and you get stabbed in the ribs.

I'm glad the levorphanol works for you.

I don't know what's going on with everyone these last few days. It seems like everyone is in some degree of misery. There were a few days that I would have had to die to feel better, but things seem to be getting better for me.
Susan

ViewsAskew
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Post by ViewsAskew »

I wondered if a mouth guard might help. It's during the day, though, that is the problem. I'm sitting here clenching my jaw. I don't know how comfie a mouth guard would be or if I'd simply clench it anyway...

Yeah, the bra thing...not to freak out the guys (so maybe ignore this paragraph)... Last summer I went for a fitting. My best friend and I have always had difficulty finding bras and we were both complaining about how they just didn't seem to fit at all anymore. Well, the woman at the fitting explained it. They didn't seem to fit because they weren't the right size! None of the US companies carry past a DDD in most cases. Turns out we needed letters we'd never seen printed on a bra, lol. Bali only makes one bra in what I now know is the right size, and it's not comfie at all. No more going to Kohl's and buying 1 and getting 1 free...I have to order online or go to places like Nordstrom's. The cost went up about 300%. But, they do fit much, much better. More importantly, I look like I lost ten pounds because they actually do what they are supposed to and I don't look dumpy on top anymore.

OK, back on topic.

Yesterday and today the levorphanol is doing what most opioids do to me. It didn't for the first three weeks. The only thing I can think of is that it's the half-life of the methadone and it's still in my system. I've been nauseous, slightly dizzy, sleepy, and have that weird feeling in my head that I associate with opioids (and do not like). It along with the jaw clenching is surely annoying. I sure hope this goes away. I really don't want to complain because in many ways this drug is much better than the methadone for me. But, is it asking too much to NOT have a constant headache or be nauseous?

When did I turn into such a whiner?????? Someone needs to take my keyboard away!
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.

Betty/WV
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Post by Betty/WV »

Hi ViewsAskew: Just wanted to tell you to go ahead and "whine". Sometimes its a relief to "whine". I feel the same way. I don't want to complain (no body listens anyway, only the friends here) but when you are hurting so bad how can you not "whine". Now, with this weather changing all the time, my fibromyalgia is flaring up. Why else would I be hurting in my neck, back, arms, knees. Especially the knee that I had a whole knee replacement. And yesterday I had a couple bouts of RLS. The mirapex and tramadol didn't seem to do much good. Does tramadol have acetaminaphine in it????? I'm going to check, and today try some Tylenol Artheritis Pain pills.

Also, I know what you mean about the bras. I need fitted for size also. I don't think I'm wearing the right size.

Take care, and I hope you find some relief, real soon. Y ou have really been having a bad time.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
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Post by Polar Bear »

Hmmm.... I'm also one of those who has to have a fitting... relatively narrow back but b.i.g. front. Our UK sizings may be a bit different but I use a G/GG but only at 34" or 36". Means I'm paying around £40 per item.

Often wonder if a reduction in my younger years would have saved me from suffering now from nerve compression in cervical spine.

Back on topic with the drugs, it seems we have always either the nausea or the headache. Take a pill for the legs, then take a pill for the nausea, or take a pill for the headache, and why doesn't the tramadol (pain relief) for rls help a headache?? Yes, I know its to do with different receptors etc. but isn't it all pretty complicated.

Keep the keyboard, and keep whining...... then I don't feel so bad when I need to have a whine :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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