Playing doctor

doety · Post by **doety** » Tue Sep 11, 2007 2:23 am

I usually keep medications, but for some reason tossed the Mirapex and the Neurontin. I was only taking 100 of the Neurontin, obviously not enough to make a difference. Sounds like you have a box of unusued medications -- probably the best bet in our situation! I'm having night after night of pretend sleep. Well 2 hours, then I'm up. This is on 5 mg of Klonopine, 10 mg. of Methadone. Tonight I was so disgused I just took two of the Klonopine, hoping that might ease me into a good sleep. I'm trying to think how to ask for two more different medications in an e-mail to my doc. Ann, if I decide to try a tiny bit of Mirapex at night, what amount makes sense? I was only taking .125 before.
This is truly a ridiculous situation and I can see why people don't believe it. It's just incredibly stupid not to be able to hold still long enough to go to sleep. I can't even imagine what all the RLS is responsible for. I love the finding that more obese people don't get enough sleep. Another reason to feel guilty about something else. Bummed out big time.

SquirmingSusan · Post by **SquirmingSusan** » Tue Sep 11, 2007 4:32 am

Oh, wow, Doety! That is a lot of clonazepam. And you still can't get relief and sleep. Is it the RLS that is still keeping you awake? Or is it the screwed up circadian rhythm thing that we all still seem to have even after the symptoms are controlled? If it's the RLS maybe you could get a higher dosage of the methadone. Can you sleep later in the night, or are you not able to sleep at all?

This is all just so difficult.

I just have to think that there is something out there for all of us that will work, it's just a matter of hanging in there and fighting for it.

I hope you have a doctor who will work hard to help you get this all under control. Hang in there!

Post by **ViewsAskew** » Tue Sep 11, 2007 5:50 am

Yikes, Doety. That's the pits.

I added in 1/4 of a .25 mg pill. But, if I'd had any .125 mg ones, I'd have tried a quarter of it. It was just too hard to split the ones I had into 1/8ths.

It took a couple nights to work my way through the side effects, but I slept the best I've slept in ages when I was on it.

I'm pretty confident that I augmented. I think the RLS has been progressing normally (I hate typing that) and so the methadone just wasn't enough. So, I probably did need an increase to control it. But, the Mirapex controlled the PLMs and the methadone just doesn't seem to do very well at it.

The first couple nights after I stopped the Mirapex, and extra 5 mg of methadone didn't help, but 600 mg of Neurontin did. Now I am getting by with 2.5 mg of extra Methadone with only 300 mg of Neurontin. Tonight I'll try only the 2.5 of methadone and see what happens.

I met my doc last week. He was a doll, as usual. I told him of my escapades; he told me he'd write whatever I wanted. We started with an increase in the methadone. I'll see, after I finish recovering from the augmentation, if that is enough. If not, he said to call him and he'll call in a script for what I want. He asked what I'd heard about Lyrica as he'd had good luck with it in general.

FidgetBoy · Post by **FidgetBoy** » Tue Sep 11, 2007 1:28 pm

For what it's worth, Ann-- I thought Lyrica did a better job on my symptoms then gabapentin-- so maybe that would work for you too? I just had such horrible withdrawal from my neurontin taper that I chickened out and went back on it. (plus it's so much cheaper!)

Hope you can find the cocktail that works for you!

doety · Post by **doety** » Tue Sep 11, 2007 1:35 pm

What I usually take is .5 of Clonazepam, not 5. So I took two last night and that was great. I got up a couple of times with RLS, walked around and didn't take too long to go back to bed. I would like not to up the Clonazepam I take, but if it's that or no sleep, I guess I'll do it. I remember trying to stop it one time and never being able to get into my bed. No Ann, I don't like to see you write "progressing normally," but I know we have to be realistic at least some of the time. I've had my doc look at me sadly and say: "you know this is going to get worse." I know it doesn't do any good to think about it at this point, but when I look back, I believe if I could have gotten through menopause without starting various drugs, that now I could just sleep, get up when I have RLS, then go back to sleep. Except for that one miserable year, when I couldn't sleep no way no how, I think I've had more problems because of the drugs. Maybe that's all wishful thinking. Anyway, with a night of sleep I'll go conquer the world (or at least do a little work).

susieandirenes · Post by **susieandirenes** » Mon Sep 17, 2007 1:11 am

Ann, reading your posts has been a great reality check for me. Recently when I posted needing advice you were right there giving me specifics that I so desperately needed. And I have appreciated that so much! I've been off the Mirapex 4 nights and am miserable & sleep deprived (DH has asked me not to drive til I get through this & today I finally agreed. Can't imagine laying in a hospital bed with legs like this!)
And now you are having such a 'crisis' time. Know I'm sticking you in my prayers!
Learned a coping technique that helps a little every now & then. Knew a guy with teriffic back pain & asked him how he managed to be pleasant with that kind of bone pain. He explained that the only way he could go on living was to find a way to put his pain to good use. Said when his pain would get to him....he would ask God to let that be him be carrying someone else's pain, and allow that person some respite. I have used that thought process for other times, but never with my RLS.
So, tonight, when I'm so distressed, I'll see if it will work that if I'm going to be that way anyhow, maybe I can carry some of yours, and you can get some rest.

Peace to you!

Post by **ViewsAskew** » Mon Sep 17, 2007 4:13 am

What a sweet post, Susie. Most of us are in and out of this boat all the time. We talk about it, we don't. As Hazel used to say, sometimes we row, sometimes we float, and sometimes someone has to row us. That's one of the things that makes this board a particularly interesting one in terms of its dynamics. . .was all take turns willingly.

Sojourner · Post by **Sojourner** » Mon Sep 17, 2007 4:50 am

FB, You may have posted it before but could you elaborate on you the difficulties titrating down from the Neruontin and how you did it. Thanks.

SquirmingSusan · Post by **SquirmingSusan** » Mon Sep 17, 2007 5:18 am

susieandirenes wrote:Learned a coping technique that helps a little every now & then. Knew a guy with teriffic back pain & asked him how he managed to be pleasant with that kind of bone pain. He explained that the only way he could go on living was to find a way to put his pain to good use. Said when his pain would get to him....he would ask God to let that be him be carrying someone else's pain, and allow that person some respite. I have used that thought process for other times, but never with my RLS.

I love that! Thanks for posting that.

FidgetBoy · Post by **FidgetBoy** » Mon Sep 17, 2007 2:25 pm

Mark- I attempted dropping by 100mg a week and experienced nausea, migraine headaches, tremors and fatigue. I was actually shocked at how physiologically addicted I was... but then, I've talked to other people who've had no problems coming off it. Strange!

Sojourner · Post by **Sojourner** » Tue Sep 18, 2007 3:47 am

Josh, Again, sorry you had such a rough time but do appreciate you sharing. I'm sure sooner or later I will be needing to do that so thought I would ask. Thanks again and best of luck.

Post by **ViewsAskew** » Thu Jan 03, 2008 8:18 pm

I read Lynne's post in another thread about trying small amounts of it only to have her hair fall out within a month (one of the reasons she stopped taking it in the first place). Lynne, I am sorry that the hair thing started so soon...it mirrors my experience with adding a small amount of Mirapex back in, too. I've been flirting with it for several months. I was going to respond in that thread, but didn't want to derail it, so thought I'd come back to this and write an update.

Over the last few months I've tried different things to get better sleep--mainly to reduce the PLMs, which are awakening me all night and keeping me from feeling at all rested.

If you just joined this thread, what I initially tried was 1/4 of a .25 tablet Mirapex for almost a month. I had most, if not all, of the annoying side effects (including augmentation) within 2-3 weeks.

So, then I reduced the amount to 1/8 of a .25 tablet and tried using it 3 days straight, then off for the rest of the week. Then I tried using it alternate nights. Either way, same thing: I get most of the side effects that drove me crazy in the first place. The good news is that I don't think using it sporadically is causing any augmentation. But, I have had a few nights when I wasn't taking it that I had to slightly bump my other meds...not sure if that's the Mirapex or just tolerance to the other meds.

Last night was horrible: lucid dreaming, constant awakenings, mind would NOT stop whirling, etc., but no RLS or PLMs. I finally slept around 7 AM, but couldn't get out of bed until 1 PM. I think I've tried my last Mirapex for quite awhile.

Also noted upthread, Neurontin hasn't worked well for me - at least not at doses of 300-600 mg - and still is not. I awaken with RLS throughout the night (but not apparently PLMs), so end up taking the full dose of methadone by 4-6 AM anyway. With the Mirapex, I can cut the methadone down by 1/4. Not so with the Neurontin. The main problem is that I just can't get up at all - I stay in bed for 10-14 hours and just have to drag myself out. It's hard to be self-employed when you're never awake to do anything :shock:

So, Josh, onto Lyrica to see. My doc mentioned it the last time--he's had some luck with it for other things and had read it might help RLS. I just have to control the PLMs, but I'd love to reduce the methadone as I can using the Mirapex. We'll see, but the saga continues. Tune in next week, same time, same channel (bat or otherwise) blah, blah, blah :wink:

SquirmingSusan · Post by **SquirmingSusan** » Thu Jan 03, 2008 9:34 pm

I guess I've been fortunate that half a .125 mirapex helps with the kicking and doesn't give me any noticeable side effects. I can't imagine it would help me cut back on the methadone, though. I also take gabapentin because it really helps the quality of my sleep.

I guess what I'm thinking is that taking other meds with the goal of cutting back on methadone isn't necessarily realistic. Is there a reason why you want to cut back on the methadone?

I take all three, but for different reasons - Mirapex to help with the PLMW, methadone for the RLS and pain, and gabapentin because I sleep more soundly when I take it. It's certainly not the perfect combination, but it's a whole lot better than RLS at it's worst.

Good luck with it, Ann!

Post by **ViewsAskew** » Fri Jan 04, 2008 4:18 am

I wasn't trying to cut back on it, really. I was at 15 mg and was getting breakthrough part of the time. So, I either go to 20 mg or I use something else to prevent it. The Mirapex allows me to only take 15 mg and it controls the PLMs. The gabapentin helps my sleep ONLY when I take it without the Mirapex. Taking it, Mirapex and methadone really screws with my sleep. Who knows why.

We're all different, huh.

bharrod · Post by **bharrod** » Sun Jan 06, 2008 12:54 am

SquirmingSusan wrote:Hmmm, my page must have reset to Greenwich Mean Time - Josh posted at 6pm today, but it's only 1:59 here.

Ann, I so want to try what you're trying. And it's only been 8 months since the horrible augmentation on Requip, with it's accompanying suicidal depression, horrible pain, and the start of all this ridiculous PLMW.

The RLS is under control, but the jerking can make me totally looney. The Wellbutrin helps quite a bit with that, but it seems like there must be a better way to treat the PLMW than with an antidepressant that comes with a high risk of seizures.

So lead on, my dear, and keep us posted. I may try that yet.

Hi, I was just reading your post on this topic and we have a lot in common, so I wanted some advice from you, if you don't mind? I am on Requip, have been now for 4 to 6 months or so......It's the only thing that helps my RLS. However, I am also on Wellbutrin at night as well, for my major depression and ADHD. So my question is this, were you taking the Requip at the same time you were taking the Wellbutrin, and if so, did you take them both before bedtime? I take them both about an hour before bed, and after an hour I am severely nauseated and cannot barely even walk across the room, and I just can't get to my bed fast enough after taking those two drugs together, the way they make me feel just scares me..............
I tried to get off of the Requip because of the Augmentation that I am suffering from right now, but I have no other alternatives for my RLS. The doc will only give me Requip for it.
I also take Adderall, which is a government federally monitored drug, I take it in the morning for my ADHD. I have heard that taking Wellbutrin, or any SSRI's with Adderall and/or Requip isn't very good.
I don't know what to do, but this combo isn't working for me. Yes the Requip works 100% of the time, to take away my RLS, I take 2MG 1 hour before bed, it works NO DOUBT for me. But with a price.............I am groggy and tired the next day from the Requip, as well as I have Augmentation bad from the Requip.