Restless Legs Syndrome (RLS) Discussion Board

cornelia wrote:I wonder too why doctors don't think of advising to rotate opiates for a few days with a DA for a few days. It is strange though that dr B advises in his books exactly that but he doesn't act on it (I think); he calls it mini drug holidays if I'm not mistaken.

Severe RLS patients are difficult to handle for neuro's and the suggestion to rotate every few days might be too much time-consuming for them because they have to guide them in their efforts. It might also be that this is only for patients that are well versed on RLS treatment and this can be too difficult for many patients. I don't know.

Corrie

Corrie, I probably shouldn't have said that! I honestly do not know if he prescribes this way or not. It may be that he does rarely because it's only appropriate in limited cases, so it seems like he doesn't. I can only say that he didn't suggest it for me - I suggested it. And, it could be that he has added this into his methods since it worked for me - it was in 2008, I think, when I started doing it - so a long time ago. Because those of us who augmented know the horrors of it, It seems perfect to use on severe cases in the beginning, before augmentation - you never augment, you never get tolerance. But, it's likely not that simple

I also think you are correct - it likely is a lot to deal with and remember - and mistakes could be made easily. A few people here who I suggested it to have been hesitant - it does seem sort of crazy when you think of it. We're used to taking one thing all the time. It would be great if they created a packet such as birth control pills - in a blister pack. Then people wouldn't make mistakes.

I tried something different yesterday, from what ViewsAskew has mentioned, but a little different because of the possibility of withdrawal. I took 1/2 Suboxone and .25mg pramipexole. I took them at 3:30 pm, a little early but I was actually getting restless. After a few hours I became very tired but did not go to bed at 9pm when my wife did, but I did at 10pm. I actually was afraid to go to bed because I didn't want to go through the whole disappointment thing of not being able to sleep.

Instead I slept until 7am like a baby I don't remember the last time I slept 9 hours. I figured that 1/2 dose of Suboxone might not lead to withdrawals and not having taken mirapex for a long time, maybe it would work again. It does. I will go back to Suboxone for 2 days and try this again on the 3rd and see how it goes! I'm very excited!

I think the plan of alternating the drugs might be the answer. Like Ann says, it will reduce the chance of augmentation. Even adding one of the other drugs, but only part of the week.

EeFall wrote:I tried something different yesterday, from what ViewsAskew has mentioned, but a little different because of the possibility of withdrawal. I took 1/2 Suboxone and .25mg pramipexole. I took them at 3:30 pm, a little early but I was actually getting restless. After a few hours I became very tired but did not go to bed at 9pm when my wife did, but I did at 10pm. I actually was afraid to go to bed because I didn't want to go through the whole disappointment thing of not being able to sleep.

Instead I slept until 7am like a baby I don't remember the last time I slept 9 hours. I figured that 1/2 dose of Suboxone might not lead to withdrawals and not having taken mirapex for a long time, maybe it would work again. It does. I will go back to Suboxone for 2 days and try this again on the 3rd and see how it goes! I'm very excited!

Like all things with this - nothing seems to last forever. I wish I could still use this, but side effects say otherwise. I hope that doesn't happen with you. If you never had issues with pramipexole and mood, it may work well for you.

ViewsAskew wrote:Like all things with this - nothing seems to last forever. I wish I could still use this, but side effects say otherwise. I hope that doesn't happen with you. If you never had issues with pramipexole and mood, it may work well for you.

I worked it all out this morning and I am going to take .125mg mirapex every 4 days, every 7th day (every second time of taking mirapex) I will take a whole tab of .25mg (instead of .125mg). When taking any mirapex I will take only 2mg of Suboxone. All the other days (two days in a row) I will continue taking 4mg Suboxone.

This gives me enough mirapex until the month before I retire. Mirapex did not really give me mood problems but after taking it constantly for years I augmented. This gives a good rest with an up and down cycle of taking it that might work. Taking less of the suboxone every few days would also help since it has an incredible half life of 44 hours (or close to that). It may not work, but at least I'm going to try.

It sounds a little complicated but last year I bought a pill box that isn't really a pill box but a monthly stand with 31 pill boxes. So all I have to do (as I did this morning) is setup everyday for the month how it should be taken and then just take the date numbered boxes in order.

My wife is ticked off at me but she cannot comprehend that the alternative is that I will lose my job, we will have to lose most of what we have, like one of the cars I'm still making payments on, and no doubt have to sell our place. Not only that but we will barely have enough to live on with our 2 retirements (because I would have to retire), and we would not have social security for several more years, just retirement money from our jobs which is not that much. This new plan sounds good to me and I just hope it works.

I know this is tricky - when we do stuff such as this we're self-medicating and we're not doctors. I figure that sometimes we have few other alternatives.

As you try it, you'll figure out what works and what doesn't. You may find you can take it three days a week, for example, and still be fine. Or that you can't Whatever - you'll know. And, hopefully? It will work for quite awhile.

(For what it's worth, I was able to tell augmentation quite easily - I backed off immediately and had about two weeks of slightly escalated symptoms, but nothing such as full-blown augmentation - so just monitor it carefully and you should be able to see if it is a problem. At you suggested dosages, I have a feeling you'll be fine. You stopped it before and restarted it - each time I think it took you weeks to augment, not days.)

ViewsAskew wrote:I know this is tricky - when we do stuff such as this we're self-medicating and we're not doctors. I figure that sometimes we have few other alternatives.

As you try it, you'll figure out what works and what doesn't. You may find you can take it three days a week, for example, and still be fine. Or that you can't Whatever - you'll know. And, hopefully? It will work for quite awhile.

(For what it's worth, I was able to tell augmentation quite easily - I backed off immediately and had about two weeks of slightly escalated symptoms, but nothing such as full-blown augmentation - so just monitor it carefully and you should be able to see if it is a problem. At you suggested dosages, I have a feeling you'll be fine. You stopped it before and restarted it - each time I think it took you weeks to augment, not days.)

It is tricky. I wish I had a choice. I will monitor it carefully. Too bad I can't pay myself doctor's wages A sad situation when there is so little known about what we have. It would be interesting to know how many people out there have it where they have to pace 24 hours a day without medication. It would be like a dream not to have to mess with meds anymore.

I slept for 15 minutes and had some strange dream and woke wide awake. I laid in bed for another 1/2 hour without any sleep coming. I have been up for about 40 minutes now. When I got up I took .125mg pramipexole. The best laid plans of mice and men...going to bed again.

Ann I hear what you actually meant to say about dr B and levodopa. It indeed can only be used in limited cases and I don't think dr B has many patients with only intermittent RLS. He doesn't mention Levodopa a lot in his Q&A pages with the same reason I guess. It's good that we are trying out things here on this board because drs can learn from us too.

Corrie

EeFall wrote:

ViewsAskew wrote:Like all things with this - nothing seems to last forever. I wish I could still use this, but side effects say otherwise. I hope that doesn't happen with you. If you never had issues with pramipexole and mood, it may work well for you.

I worked it all out this morning and I am going to take .125mg mirapex every 4 days, every 7th day (every second time of taking mirapex) I will take a whole tab of .25mg (instead of .125mg). When taking any mirapex I will take only 2mg of Suboxone. All the other days (two days in a row) I will continue taking 4mg Suboxone.

This gives me enough mirapex until the month before I retire. Mirapex did not really give me mood problems but after taking it constantly for years I augmented. This gives a good rest with an up and down cycle of taking it that might work. Taking less of the suboxone every few days would also help since it has an incredible half life of 44 hours (or close to that). It may not work, but at least I'm going to try.

It sounds a little complicated but last year I bought a pill box that isn't really a pill box but a monthly stand with 31 pill boxes. So all I have to do (as I did this morning) is setup everyday for the month how it should be taken and then just take the date numbered boxes in order.

My wife is ticked off at me but she cannot comprehend that the alternative is that I will lose my job, we will have to lose most of what we have, like one of the cars I'm still making payments on, and no doubt have to sell our place. Not only that but we will barely have enough to live on with our 2 retirements (because I would have to retire), and we would not have social security for several more years, just retirement money from our jobs which is not that much. This new plan sounds good to me and I just hope it works.

I know that it seems hopeless at times. We went through it. Lost my job. I know I've told you all of this before. We sold everything. We lost everything and our house. We did keep our vehicles and 5th wheel. We were going to live in our 5th wheel. We lived in it awhile, then rented this house for very little. Ended up buying it on a contract for very little. It has all worked out. But at the moment, it is very difficult.
I think it will work out for you too.

I hope it works out. Off to bed. I had a restless 5 hours last night but I was able to work. I am not taking anymore meds tonight no matter what.

Eefall - hope you got some sleep

Polar Bear wrote:Eefall - hope you got some sleep

I had a great 7 hours sleep and a great day at work. It makes all the difference in the world to sleep well. I sure hope it continues for awhile, as with many here, sleep is fleeting.

Another 7 hour night sleeping! The plan is starting to look much better. Last night I slept very deep woke up and turned off the alarm 5 minutes before it went off then slept another 15 minutes by accident. Awesome!

EeFall wrote:Another 7 hour night sleeping! The plan is starting to look much better. Last night I slept very deep woke up and turned off the alarm 5 minutes before it went off then slept another 15 minutes by accident. Awesome!

Congratulations!

Hope it continues to be that way!