Adventures with Mirapex

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Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
SquirmingSusan
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Adventures with Mirapex

Post by SquirmingSusan »

I really have no idea what inspired (possessed?) me to take a whole .125 mg Mirapex last night... I think it was complete desperation about the whole circadian rhythm, up all night, sleep all day thing. So I gave the Mirapex another shot. That is one weird and powerful drug.

It worked. I fell asleep at 1am and pretty much slept through to about 9am. Then I got up and stumbled around for a few hours until passing out from about noon to 2pm. I woke up a couple times during the night and mostly just lay there totally enjoying the complete lack of the urge to move my legs and arms. Gosh that's a heavenly feeling! The feeling of absolutely NOTHING but total relaxation. That's something that the methadone doesn't do for me. It takes care of the weird sensations, but the urge to move is still there. The DAs give me this totally blissful state of relaxation in the legs. Wow, that's almost as hard to explain as the creepy crawly sensations. Oh, and even the pain went away completely.

The downside was this totally annoying auditory hallucination of something that sounded like a cross between loud screeching and a siren. Like a cardinal but screechier. And a bit of nausea. And the fact that I was totally stoned today until after my nap.

I don't know why I stopped taking half a pill at bedtime. It sure was helping me sleep AT NIGHT. I wonder how long I can take this stuff without having augmentation set in. I just don't want to make this whole thing worse. But that feeling of NOTHING in my legs and arms almost makes the risk of augmentation seem worth it. Ah, blessed relief.

Do any of you who take the DAs get such a wonderful sense of relief?
Susan

ViewsAskew
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Post by ViewsAskew »

The relief I get from methadone is exactly the same. No urge, no feelings. And, less pain. The pain I feel isn't from the RLS, I don't think. I think it's something else - a lack of deep sleep pain. The Mirapex doesn't help that at all.

It also doesn't knock me out. It makes me very sleepy, but I awaken frequently throughout the night when I take it and it takes me from ten minutes to 1/2 and hour to get back to sleep. The methadone keeps me out most of the night.

Not that my experience is the right one or that yours should be like mine, maybe it's that the methadone dose is too low for your symptoms. Then again, it just might not be the right drug for you, and Mirapex is not the right one for me. The only thing that Mirapex does better for me is to control the PLMD - but I don't ever notice that and the PLMW went away for the most part when I recovered from the augmentation. The RLS didn't, but the PLMW did.

I think it's great that it works well for you at that dose, though. Enjoy it. That daytime sleepiness may go away in a short time, though the auditory stuff sounds problematic. Maybe it will go away, too. You can always hope!

My solution lately has been to use a full dose of methadone (for me, 17.5 mg) for three nights, then use 10 mg of methadone with .125 of Mirapex for two nights. Each night I add 1000 mg of l tyrosine. It keeps me asleep where the Mirapex can't and it seems to help with the PLMD where the methadone can't.

Since the Mirapex works so well for you, I wonder if the l tyrosine would help.
Ann - Take what you need, leave the rest

Managing Your RLS

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SquirmingSusan
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Post by SquirmingSusan »

Well tonight I took half a Mirapex at about 10:30 pm, and I'm not sleepy at all at almost 2am. But I am really nauseated. I think I'm going to have to start very low and work my way up to that whopping .125 mg dose. And yes, I'm sensitive to most medications like this. I can go from suicidal to happy on the smallest doses of antidepressants, and have horrible side effects from the lowest doses of just about everything.

You're probably right about the methadone. I'm probably just not taking enough to get total relief. On the other hand, the dose that I'm on doesn't make me sleepy, and I really like that, especially since I need to take it mid afternoon and a couple evening doses to keep the pain at bay. Maybe I need a whopper dose at bedtime. There have been days when I've nearly doubled my dose because of pain, and it still hasn't produced the intense calm in the legs like the Mirapex does, but it has made me sleepy. But I've always heard that with pain meds to only take enough to knock the pain down to bearable, not to take it totally away. And with the methadone, the urge to move becomes manageable and ignorable. It's still there but I'm not aware of it until it stops. And then the difference is astounding.

OK, so the plan for now is to work up in dosage until I can tolerate the side effects or they make me give up, and see if I can make the Mirapex work. I wonder how long it will last, being that I augmented within 3 weeks on Requip. But I won't be raising the dose like I did with Requip.

I've tried a lot of supplements to help with RLS and with sleep. With the exception of some herbal sleep preparations, I have to say that I haven't noticed much help from any of them. But I do have Tyrosine around and have tried it. And I'm trying it again. I love my Sleep MD, and that's just a combination of weeds and melatonin. And there's another one that helps as well called Tension RX Nighttime. It has 4-amino-3-Phenylbutyric acid, which is converted to GABA in the brain. It seems to work much better than just taking GABA. It's something that KathyBear had said was in a supplement that was helping her, and I tracked some down and have tried it. It helps with sleep and it helps with anxiety.

Oh yeah, the PLMD. Yuck. I had horrible rebound RLMW this morning, or maybe it just seemed like rebound because it wasn't as bad overnight. That's one thing that I got from the augmentation that has never gone away.

Thanks for the input, Ann. I'll keep you (well, mostly me) posted as to how this all works out. I realized that this is a great way for me to journal about what's working. I was reading back a few months when some things were working, and figured I could try some of them again.

It sure would be easier if there were a cure for this disease. It's really tiresome to deal with day after day. When they start doing deep brain stimulation, I may be first in line to volunteer my brain. What can it hurt - my brain already doesn't work most of the time.
Susan

ViewsAskew
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Post by ViewsAskew »

This stuff sure is weird. The tyrosine didn't help me the first time around. Not sure why it is this time, but I'm glad it is. I sleep like a rock - none of the other drugs do that for me, including the sleep aids like Ambien. And, not a drugged rock, but a tired rock.

Hope you get some sleep. I'm tired, but forgot the Mirapex, so have to stay up until it works....the methadone at this low dose works while I'm awake, but I can't sleep until the Mirapex kicks in....let's see if I can hold these eyelids open for another hour :shock:
Ann - Take what you need, leave the rest

Managing Your RLS

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cornelia

Post by cornelia »

I have said before: for me the OxyContin helps for RLS, not much for PLMD. The last 2 months I have tried taking 0.25 mg Requip every 3rd day, because my neuro says that my receptors stay clean that way. I want them to stay clean, because I am so afraid that if I have to stop narcotics for a while, that I have screwed up my DA receptors by that time. My nights with Requip are much better, I sleep deeper and longer. But...... the day after I experience more severe PLMW. So I find the meganism is that when PLM's are realtively well dealt with at night, they will 'wait' and appear more severy at daytime?

Corrie

ViewsAskew
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Post by ViewsAskew »

Interesting, Corrie.

Or maybe you just get rebound from all dopamine agonists. I wonder if we'll ever know.
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 »

That is interesting, Corrie. I wonder what your neurologist means by saying that Requip keeps the receptors clean? And with the rebound PLMW, yes, it seems like my legs just need to kick a certain amount every day and if I knock down the kicking at night, they kick more during the day.

This is such a weird disorder, and the medications are so weird as well. I just have to hope that, now that researchers are zeroing in on what causes the RLS and what helps relieve it, that newer and better meds will be developed that work more naturally with the body and don't have such wicked side effects. I'm really bummed that the Neupro patch has been recalled in the states and isn't supposed to be back for a long time.

Corrie, did you ever try the patch? It's supposed to be gaining approval for RLS all across Europe now, and might even be available there. Twenty four hour relief from this sounds delightful.

Last night I slept great. I took half a Mirapex (which did seem to give me a bit of nausea), a Sleep MD, a Tension RX, 500 mg. of Tyrosine, a 300 mg. Neurontin, and a 3mg. Lunesta. Slept like a brick from 4am-noon.

Tyrosine is supposed to be good for people with hypothyroidism as well.
Susan

ViewsAskew
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Post by ViewsAskew »

I've found that this time around the tyrosine is working (not sure why) but only at 1000 mg. I took 500 last night and was awakened quite frequently from the Mirapex. Today I am a zombie and feel I had NO deep sleep. Tonight I'll be back to 1000 to see what happens.
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, is tyrosine available over the counter in a health supplement shop. I hadn't heard of it before but googled it briefly today.
Thank you.
Betty
Betty
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ViewsAskew
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Post by ViewsAskew »

It is here in the US. There are some lengthy discussions about it in the non-pharm section that might be worth reading. At the time, it didn't help me, so it's obvious that it's not for everyone. But, now, it's working well. I have NO idea why.
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 »

Susan, I'm sorry if I didn't explain well. No, Requip doesn't keep the DA receptors clean, but if you take 1 DA only every 3rd night these receptors stay clean (according to my well-informed neuro). He also told me a long time ago that he guessed (and I understand you do too) that PLM's are forced by the body to appear anyway; if you stop them at night, they will be there during the day. Don't know if he is right.

The patch has only just been approved in Europe for RLS. In my country it will probably be available at the end of this year. I'm not going to try it, at least if I don't have to. The DA's take away so much energy. I have tried Dostinex for 6 months (half life 60 hours) and although it helped much better than Requip, I was a zombie all day and became depressed. I slept like a log at that time though. I wonder if Dostinex works similar as Neupro patch.

Corrie

maxietobias
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Post by maxietobias »

I've been taking Mirapex 2 tabs 3 times a day for awhile and it became less effective so my doctor added generic Neurontin 300 mg --take 2 capsules 3 times a day. Ta da!! No more RLS. It feels fantastic!!

Ruth

SquirmingSusan
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Post by SquirmingSusan »

Corrie, I got that about taking the Requip every 3 days. I just don't quite understand what the neuro means by saying it keeps them "clean." I suppose it means that it keeps the receptors free and available for the dopamine to bind to them?

I think the patch is quite different from Dostinex. It's a DA with a very short half life, but it is administered constantly through the skin. So if it has unbearable side effects, you can pull it off and the medication is out of your system quickly.

It seems like EVERY medication I take has the side effect of taking away my energy. Except for Wellbutrin, which is so energizing that I sometimes have to skip every other day until I settle down. But most antidepressants (which I really need) anything to treat RLS leave me drugged out and fatigued. But what's the alternative?

It's just all so frustrating. I set up a new home business, and I can do the production work all night, but I have to get out there and do some marketing during the day. And if I don't get the marketing done, I'll never have the work to do at night. :roll: (I am getting business, though, just not enough. It will come.) I get so hopeful about the DAs because they seem to fix the whole circadian rhythm disorder thing and make me sleep at night, but then I can't manage the side effects.

And so we all press on in our bleary-eyed, fatigued states.
Susan

SquirmingSusan
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Post by SquirmingSusan »

maxietobias wrote:I've been taking Mirapex 2 tabs 3 times a day for awhile and it became less effective so my doctor added generic Neurontin 300 mg --take 2 capsules 3 times a day. Ta da!! No more RLS. It feels fantastic!!

Ruth


That's great, Ruth! Yes, I've experienced that feeling of no RLS and it is fantastic. Now if I took that much medication, I'd be blissfully asleep all day and all night. But I do love to hear it when things work well for people!
Susan

cornelia

Post by cornelia »

It is so difficult in another language to explain Susan (and I have only slept from 0500 to 0830 with Requip mind you). I will explain the clean receptor thing later; I just am not able to now.

Maybe you are right in thinking that the patch works differently from Dostinex. I hope so; I might give it a try when it becomes available.

I feel so sorry for you and all of us that are having such tremendous problems with this disorder. It is so hard to manage worse periods, when the meds seem to be not working as well.

Corrie

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