Catching up

john_a · Post by **john_a** » Sun May 24, 2009 3:16 am

Hi all,

Haven't been in for a while, thought I would bring you up to date with how things are going for me.

First, I have now been on Mirapax for some months - used to be on Requip, am finding Mirapax better, lasts longer and augmentation not as severe.

Only thing is, before I started on ANY drug interventions, I did have periods of abstinence from RLS, but now I have to remain on the meds permanently, if I miss a dose, RLS sets in within hours.

I am taking 250mcg of Mirapax twice a day, @ 4PM and again @ 11PM. Some nights I need to take more, usually early in the morning an hour or two before the usual time I would get up.

An interesting thing is that now my RLS is specifically affecting my arms, when I am trying to sleep, buy when I'm up and sitting, it gets the legs. It's a bluddy awful disease. If you know me from before I first started getting it when I was about 11 years old, my Dad and one of my sisters has it, as did my Aunty and Grandmother - it's hereditary, little doubt about that!

One question, but a serious one - Does anyone else, when lying down for an afternoon nap, and drifting off to sleep, with RLS symptoms about to start, get confusional and possibly ever weird and bizzare thoughts, when semi awake? It happens to me all the time, I think it may be due to sensitisation of the dopamine receptors by the meds, but I'm not sure? It's always a sure sign when it happens that RLS is going to set in - an absolute frustrating nightmare of a thing.

Anyway, any feedback would be appreciated.

Thanks, John

PS Look forward to checking out the live chat on Thursdays, what time is it on in GMT, or Brisbane , Australia time - thanks.

Post by **ViewsAskew** » Sun May 24, 2009 3:36 am

John - the extra RLS, the RLS in the arms....it's most likely augmentation.

The only way to get away from it is to stop all forms of dopaminergics. It's not fun (the RLS usually gets even worse for a few days to a few weeks), but it often results in much lessened RLS at the end.

When I was taking Mirapex, I has the oddest thoughts....waking, sleeping, in between waking and sleeping....they never stopped. But, they were particularly bad during light sleep or as falling asleep or awakening. As soon as I stopped it? They were gone. I also had songs in my head 24/7. Sometimes my brain would be singing two or three songs at the same time! Craziness.

john_a · Post by **john_a** » Sun May 24, 2009 3:45 am

ViewsAskew wrote:When I was taking Mirapex, I has the oddest thoughts....waking, sleeping, in between waking and sleeping....they never stopped. But, they were particularly bad during light sleep or as falling asleep or awakening. As soon as I stopped it? They were gone. I also had songs in my head 24/7. Sometimes my brain would be singing two or three songs at the same time! Craziness.

Views - you'll have to pardon me but your answer made me really laugh, not in jest but because that's EXACTLY what happens with me, and the way you described it was so 'real'.

I thought I was going mad, but it must be the drug.

As for going off Mirapax, that seems an utter impossibility, my RLS is so severe it would be torture to not have the drug relief, semi-adequate as it is.

In my opinion, once you start with the dopamine agonists, it's a lifetime thing, no going back. If I try to stop them, I'm almost an emergency room case.

SquirmingSusan · Post by **SquirmingSusan** » Sun May 24, 2009 4:18 am

Stopping the DAs is difficult, but not impossible. Most people need to take opiod painkillers for a while until the augmentation settles down, and that may take a month or two, or even longer. Then you'll be so amazed by the profound relief you get from the painkillers and the lack of side effects that you'll want to just stay on them. Painkillers are a good options for treatment of RLS but sometimes it's hard to get the doctor to agree.

john_a · Post by **john_a** » Sun May 24, 2009 5:19 am

SquirmingSusan wrote:Stopping the DAs is difficult, but not impossible. Most people need to take opiod painkillers for a while until the augmentation settles down, and that may take a month or two, or even longer. Then you'll be so amazed by the profound relief you get from the painkillers and the lack of side effects that you'll want to just stay on them. Painkillers are a good options for treatment of RLS but sometimes it's hard to get the doctor to agree.

Thanks Susan, only thing is I've tried panadeine forte , codeine, Tramadol and others and they do absolutely nothing?

Post by **ViewsAskew** » Sun May 24, 2009 6:14 am

john, I'm not an expert in opioids, but Tramadol didn't touch my RLS. Neither did codeine (then again, it made me sick, so maybe it would have).

I did, however, find help with the big guns.

In my opinion, you will not be able to continue taking the DAs - you'll go mad first. But, that's just me and what happened to me. As the augmentation worsened - like you, it was my arms, taking it once a day, then twice, then three times - it eventually got to the point that it was so bad that the augmentation was intolerable even when medicated. The PLMWs were horrible - I'd jerk when standing, losing my balance.

I was kept on them for about 18 months after augmenting. In the last 3-6 months, I slept rarely for more than 30 minutes at a time, often getting as little as 30 minutes a night, never more than 3 hours total. I was unable to work, saw no family or friends, and lost all vestiges of any life.

Getting off them was what allowed me to get my life back. Without the strong opioids, I don't know what I'd be doing today. We started with mild ones, then tried moderate. Neither worked. When we used methadone, it was strong enough to get me through the period where I stopped the Mirapex completely. I still had a difficult time, but it was manageable.

Of course, that was my experience...

john_a · Post by **john_a** » Sun May 24, 2009 9:16 am

ViewsAskew wrote:john, I'm not an expert in opioids, but Tramadol didn't touch my RLS. Neither did codeine (then again, it made me sick, so maybe it would have).

I did, however, find help with the big guns.

In my opinion, you will not be able to continue taking the DAs - you'll go mad first. But, that's just me and what happened to me. As the augmentation worsened - like you, it was my arms, taking it once a day, then twice, then three times - it eventually got to the point that it was so bad that the augmentation was intolerable even when medicated. The PLMWs were horrible - I'd jerk when standing, losing my balance.

I was kept on them for about 18 months after augmenting. In the last 3-6 months, I slept rarely for more than 30 minutes at a time, often getting as little as 30 minutes a night, never more than 3 hours total. I was unable to work, saw no family or friends, and lost all vestiges of any life.

Getting off them was what allowed me to get my life back. Without the strong opioids, I don't know what I'd be doing today. We started with mild ones, then tried moderate. Neither worked. When we used methadone, it was strong enough to get me through the period where I stopped the Mirapex completely. I still had a difficult time, but it was manageable.

Of course, that was my experience...

Hi Views

Well, this sheds a whole new light on things. The thing is, I'm just not sure I have the courage to start taking methadone. I thought it was a drug of high physical addiction, and only for ex heroin users, and the side effects were rotting teeth, and loss of libido etc?

I'm seeing my neurologist on Tuesday morning, and am going to copy what you wrote and show him. The effects of Mirapax you describe are almost identical to what my life has become - my God - I thought it was just me being depressed and withdrawn, but I couldn't understand why it has lasted so long?

I may give methadone a go - stay tuned - I'll let you know what the doc says on Tuesday, he's normally very good about these things, and is one of the best neurologists in Australia, and is very smart.

Would appreciate any feedback from others who have been through the DA experience as mentioned here.

John

EDIT: I just noticed two threads called "Started methadone" and "Methadone users", I'm starting to get excited about this and will read them in a minute. I'm going to write down the link to this site and give it to the doc, he's the kind who will have a look, and he often speaks with his colleagues on the RLS subject. Thank you so so much.

Neco · Post by **Neco** » Sun May 24, 2009 4:14 pm

Click the link in my signature for the Mayo algorithm, and print it out to show your doctor.

They go over many of the opiates that are used for RLS..

As for the big stuff, I wouldn't jump straight to Methadone if you can avoid it.. If you have insurance (I'm guessing yes since you get Mirapex and Requip) then I would look into a controlled release opiate such as Oxycontin or MS Contin (morphine).

Controlled release meds work VERY well for severe RLS that pretty much never goes away.. They pretty much have the same duration as you might get from Methadone, because Methadone has such a long half-life that its effects can mimic a controlled release drug once you are constantly taking it.

Many of us only need to dose once a day, or twice at the most, depending on how the RLS is. The biggest hurdle with CR meds is that they are insanely expensive, whereas Methadone is practically dirt cheap.

However I caution Methadone only as a last resort, because of its strength, potential side effects (uncommon but still possible) and because of the stigma attached to it... There is an expensive alternative called Subutex (buprinorphine) which is also very expensive but potentially better for those who can't tolerate Methadone. It's also a true opiate blocker as opposed to an actual opiate, but does have sedating effects..

I'd recommend reading up on the drugs I have mentioned. They are all good candidates, but just like DA's, I recommend starting with the weakest drug at the lowest dose possible.

Post by **ViewsAskew** » Mon May 25, 2009 2:03 am

No time right now...but will try to remember to reply when I am done making dinner (I guess I shouldn't read the board when I don't have time to respond....)

john_a · Post by **john_a** » Mon May 25, 2009 2:26 pm

Zach - have you ever heard on Naltrexone being used for RLS?

Neco · Post by **Neco** » Mon May 25, 2009 7:02 pm

NO - DO NOT TAKE THIS STUFF IF YOU ARE ON OPIATES

If you aren't on opiates...
I have no idea what it will do to you and until a physician can give you a reasonable explenation as to why he thinks it might work, I would refuse to take it..

Naltrexone, like Naloxone, is an opiod antagonist which means it reverses (overdose antidote) and blocks (prevents from binding/working) opiates. However Naltrexone is a long-duration drug.

I don't know what it will do to RLS, but like Naloxone I suspect it may induce a severe attack.. However I say this with no scientific merit or research based resources. This is only a hunch and I could be WAY out in left field. My reasoning is that if opiates relieve RLS, than an opiate-antagonist may very likely induce severe symptoms on the flip side.

If someone like me, for instance were to take this stuff however, it would immediately send me into a severe withdrawal, likely aggravating my RLS even more. No one should ever jump to this stuff straight from a narcotic if they haven't already been through withdrawal or are not unconcious and oblivious to the agony it may cause. They actually include Naloxone (or maybe Naltrexone?) in Buprinophine tablets under the name Suboxone, as a security precaution to prevent abuse by crushing or injecting.. Anyone trying to destroy the time release component of the medication would be put into instant opiate withdrawal.

This is why I recommend Subutex over Suboxone, as it lacks this component and is pure buprinorphine.

I honestly can't say what it will do to you one way or the other, but if it makes your RLS worse by chance - you are screwed because it will block any opiates they give you to try to relieve your symptoms, until the medication is filtered out of your system. Unlike Methadone, which blocks -other- opiates with weaker affinities on a sliding scale percentage (Methadone dosage strength vs competing opiates dosage strength - take enough and you overcome the block of Methadone. This is one way addicts who are relapsing can Overdose) this stuff completely blocks opiod molecules and will prevent them from binding to your receptors, until the drug wears off.

But that's what makes it such a crucial life saving tool in the E.R for overdose cases.