Hate the downs of the ups and downs

[ViewsAskew]

Hi Kimberly,

I found that, for me, daily methadone alone wasn't the right approach. But, I tend to have odd side effects.

I used it for several years. There was a slow decline in cognitive function and wakefulness during the day.

I'm finding it to work relatively well in combo with Mirapex. I augment in about 7 to 10 day, but even after 5 days, it's already getting worse. I was off the DAs for a long time and hoped I'd not augment. It's nice to know, though, that I can manage 2-3 days and not have issues.

Right now I'm trying 2 days of Mirapex and 2 days of methadone, with a bit of tramadol as needed on the Mirapex days. It's far from perfect, but it's better than any other that I've tried.

[Kimberly]

Hi Kimberly,

I found that, for me, daily methadone alone wasn't the right approach. But, I tend to have odd side effects.

I used it for several years. There was a slow decline in cognitive function and wakefulness during the day.

I'm finding it to work relatively well in combo with Mirapex. I augment in about 7 to 10 day, but even after 5 days, it's already getting worse. I was off the DAs for a long time and hoped I'd not augment. It's nice to know, though, that I can manage 2-3 days and not have issues.

Right now I'm trying 2 days of Mirapex and 2 days of methadone, with a bit of tramadol as needed on the Mirapex days. It's far from perfect, but it's better than any other that I've tried.

Thanks Ann! I was prescribed 10 mg and took 1/2 tonight. It's after 4am so no luck...but I'll up it to a whole. I'm always frightened to try something new....so afraid it might make things worse and considering I'm at the end of my rope, so to speak, I don't think I can handle 'worse'. It's been a very long year of no successful treatment, the 'torture' lasts all night, and I haven't been able to sleep until about 5 or 6 am and then for just a few hours. My new doctor is considering TMS (temporal magnetic stimulation) in hopes that it will help with both RLS/PLMD and my depression. I've never heard of it being used for our condition, but at this point, I don't think it can make me crazier than I already am;)
Regards.

[ViewsAskew]

Did it help after taking the additional?

For what it's worth, I need 25 mg methadone to completely resolve it so I can sleep. 5 mg easily keeps me through the late afternoon/early evening, then 5 more around 8 to 9 PM. Then 15 mg about an hour before bed. Less and I can stay awake forever without RLS, but can't sleep.

I can't say I've heard of anyone that the methadone made it worse - not saying it can't happen of course! Hopefully this will help.

Recently someone was saying that Dr Buchfuhrer is suggesting that we not take so much opioid that we get complete coverage - that this leads to us needing more. I just don't know how to do that practically. Either I can sleep or I cannot!

[cornelia]

That was me quoting dr B Ann.

IMO: when you say that with a certain dose of Meth you can lie down without symptoms that means that you are having at least 100% coverage. The fact that you don't sleep with less Meth is probably a problem that has to be dealt with separately. In fact you are using the extra Meth a a sleeping tablet. Would you agree or am I wrong?

Corrie

[Kimberly]

Did it help after taking the additional?

Well Ann, I upped it the next night to a whole tablet and had really really bad side affects...probably should have gone to the ER. The reaction was delayed, but it affected my breathing, my heart was racing, I had nausea and vomiting, cold chills, and felt so 'drugged' that I couldn't make it from the chair I'd briefly fallen asleep in back to my bed without help. It was very scary. Doc suggested going back to half for a few days and see if it helped, but I was just too afraid to try again.

So, at this point, I'm taking nothing but .75 mg of xanax for RLS/PLMW and it's doing nothing except allowing me to remain sane at 5:00am when I still haven't slept

[sleepdancer]

Hi. I cannot speak to methadone as I have not used it. Just based on my general experience with meds, I encourage you when adding meds to first discern if a current med is allowing breakthough PLMD symptoms OR causing augmentation. I suffered for years on Mirapex thinking what was happening was a progression of the disorder. Turns out it was augmentation. Even though it was suggested to add other meds to the Mirapex, I was wary of adding a med to treat symptoms of another med. I mean, where does it end? I ended up weaning off the Mirapex and onto Requip, and got by for a while before trouble reappeared. I recently went through a very rough period as I went off all PLMD meds and now use only a TENS Unit for treatment of my PLMD. Not suggesting everyone should or could do that. Just saying that continuing to try to make a problem medication work might not be the only direction to go.

[ViewsAskew]

That was me quoting dr B Ann.

IMO: when you say that with a certain dose of Meth you can lie down without symptoms that means that you are having at least 100% coverage. The fact that you don't sleep with less Meth is probably a problem that has to be dealt with separately. In fact you are using the extra Meth a a sleeping tablet. Would you agree or am I wrong?

Corrie

Sorry, Corrie - I missed this earlier.

What I was trying to say is that I need much less methadone to have 100% coverage while awake than I do in order to get any sleep. For example, 10 mg would resolve all my waking RLS. When I am tired enough to sleep, even though I'd have no symptoms at that time, if I laid down, I'd have horrible symptoms. I might fall asleep for 10 minutes, but I'd be awakened very soon.

In order to sleep at all, I'd need 10 more mg. This would mean that I'd fall asleep for 30 minutes to 60 minutes, then awaken and have to move around. I might or might not be able to fall asleep again in the near future. All night would be very fractured sleep.

IN order to stay asleep, I'd need yet another 5-10 mg. 5 would mean I'd awaken only a few times with RLS. 10 mg would keep me asleep through the night.

[ViewsAskew]

Did it help after taking the additional?

Well Ann, I upped it the next night to a whole tablet and had really really bad side affects...probably should have gone to the ER. The reaction was delayed, but it affected my breathing, my heart was racing, I had nausea and vomiting, cold chills, and felt so 'drugged' that I couldn't make it from the chair I'd briefly fallen asleep in back to my bed without help. It was very scary. Doc suggested going back to half for a few days and see if it helped, but I was just too afraid to try again.

So, at this point, I'm taking nothing but .75 mg of xanax for RLS/PLMW and it's doing nothing except allowing me to remain sane at 5:00am when I still haven't slept

How awful, Kimberly!

It may be that you cannot tolerate this drug but can tolerate a different opioid. I get the same thing you got when I take hydrocodone. Within 20-30 minutes, I'm projectile vomiting and feel horrible. But, I can take others OK.
I imagine you are afraid of trying again. If you do, maybe try to increase slowly. It may mean you've no coverage initially, but hopefully it will help prevent such a strong reaction.