In Through the Out Door

[ViewsAskew]

Yes, I've tried them all . Looooooong story, not different outcome than most of us here who are in the more severe cases. You do what you can, then do some more .

[majoraward]

Yes, I've tried them all . Looooooong story, not different outcome than most of us here who are in the more severe cases. You do what you can, then do some more .

So I guess that means I have to read all 8,800+ of your posts to know what you have been taking I'll be madder than a mad hatter after all that reading! Maybe even madder than a SRLSPOA! Okay, I'll tell you, Severe Restless Leg Syndrome Patient on Augmentation, now that is scary!

I wish I would have saved all the pills I have flushed over the years, then at least I would have the bottles to let me know exactly all the medications I have taken...and yeah I also throw my batteries away in the trash can...I am destroying the planet one pill, battery, and plastic bag at a time. Of course 1,000 years from now the most valuable things on the planet will be those 3 items from our time plus dirty baby diapers, especially those from the 20th century. Don't ask me why, it is just a cosmic hunch of mine.

Seriously though once you try everything then you go out and see what else has come out...the Zeo is pretty cool. Have you tried Neupro already? It hasn't been out too long has it? I tried it a few months ago and it worked but the side effects were worse than cure.

[ViewsAskew]

Hey, I've had the same thought about wishing I'd kept a list of the meds at the least.

So you don't have to read over 8000 posts, lol, the basic upshot of my drug history:
- three different benzos
- three different antiseizure - none resolved the symptoms (and I don't have pain so not helpful to me)
- at least six or seven opioids, severe side effects with all except methadone
- three dopamine agonists, augmented on all

And multiple combinations of the above .

I am very reluctant to try Neupro because I've always augmented with each DA. Mirapex made me suicidal when I took it intermittently (to avoid augmentation), so that also makes me concerned (among about 15 other side effects!).

[majoraward]

I am very reluctant to try Neupro because I've always augmented with each DA. Mirapex made me suicidal when I took it intermittently (to avoid augmentation), so that also makes me concerned (among about 15 other side effects!).

Darth Vader: "Impressive. Most impressive. Obi-Wan has taught you well. You have controlled your fear. Now, release your anger. Only your hatred can destroy [RLS with Neupro]."

...of course Darth was wrong but you never know. Neupro gave me 8 hours of wonderful sleep a night - too bad it made me grumpy like Darth Vader

[majoraward]

Yippi! I think I found a way to fix my sleep up, at least for awhile.

My doctor when he gave me the last Mirapex prescription said on the bottle to take 1 to 3 at night. They are .25mg. I have been taking 2 and last night I tried 3. My Zeo data doesn't look that good but I slept for over 2 hours at my couch recliner because the Mirapex along with the Lyrica and Methadone knocked me out. My data says that I took less than 5 minutes to get back to sleep and I immediately had 36 minutes of deep sleep so that tells me I was probably getting deep sleep on the couch too. Instead of the 4 hours and 32 minutes sleep the Zeo has it was actually 6 h 32 m. My Zeo says REM sleep was great even without knowing about the extra 2 hours.

So I think the problem might be solved although I still feel tired this morning which is a little strange. I have no explanation for my sleepiness but the data looks good. I know it is a feeling of really being tired, it is not the feeling of druginess, although I do feel that now. Maybe I need to catch up on sleep? Maybe tomorrow after another day of good sleep I will once again be okay.

[majoraward]

I just watched my namesake. The movie A Christmas Story. It is where I picked up the name majoraward because the dad in the movie won "a majoraward".
We love that movie but with being tired and having watched it so many times I kept falling asleep

[badnights]

I must admit, I have a hard time telling the difference between being drug-tired and being sleep-deprived tired.

I stopped taking Mirapex/pramipexole 3 yrs ago, after 3 weeks on it, because it made me unbearably sleepy all day, even though it enabled me to sleep at night. But I am now taking it two nights a week (only .25, in combo with my hydromorph contin) and it doesn't seem to have that effect anymore.

I just don't know if you can tell by whether or not it feels druggy.

[ViewsAskew]

I cant' tell the difference with some drugs, though I can with others. Methadone? Can't tell. It's almost identical to me as being sleep-deprived tired. Mirapex never made me tired, just mentally unhappy/depressed/other icky changes. I've also noticed that drugs' effects change over time. For awhile, I'd fall asleep in the middle of a sentence when Mirapex kicked in. If I wasn't in the bed about 80-90 minutes after taking it, I was in big trouble. Heck, once I fell asleep during sex! Explaining that to hubby wasn't the most fun, lol. Now when I take it, nothing like that happens at all.

I think one of the biggest issues we face is trying to figure it all out....and we can't. We want to ascribe things cause and effect. We want to control, know, understand, etc. It's close to impossible with more difficult cases and each time we add another drug, it makes it even harder.

I've been fighting this stuff off and on since 2005. Right now, I'm ready to get Zen about it. Maybe I can maintain that over time. The last twenty times I did it, I thought my new attitude would stay with me forever. Guess that just shows that I wasn't really doing it .

[majoraward]

Heck, once I fell asleep during sex!....The last twenty times I did it, I thought my new attitude would stay with me forever. Guess that just shows that I wasn't really doing it .

Above quote shows an interesting way to manipulate data

I know the difference between drug tired and tired because I have been doing this for over 12 years. I have played with turning on and off all these drugs over that time - meaning experimenting on myself by stopping and starting them for days, weeks - months at a time. I have had some very bad Dr jekyll and Mr hyde times over the years.

[majoraward]

Hey! The Mirapex worked last night (going from .5 mg to .75 mg)! I had averaged about 54 the previous nights. 1 hour 7 minutes deep sleep, 1 hour 57 minutes REM sleep. I'm feeling really good!!!

[majoraward]

It could be .75 Mirapex helps with good night sleep but the side effects of higher dose during day may be too great. I am feeling a little sick and tired but working is okay. Anyone know how long Mirapex lasts?

[Polar Bear]

I know that mirapex has a half life of 8 - 12 hours, 8 hours in younger folks, and up to 12 hours in the elderly.

I have difficulty in telling the difference between sleepy sleepy or sleepy drug effect.
On about 3 occasions when visiting with (close) family during an afternoon I dozed off while we sat around the kitchen table having coffee.
I really really tried to stay awake and it was so hard and seemed so rude. splashed my face with cold water and headed home. But I was no longer tired.... and
indeed didn't sleep until about 3am the following morning.

[majoraward]

I know that mirapex has a half life of 8 - 12 hours, 8 hours in younger folks, and up to 12 hours in the elderly.

I have difficulty in telling the difference between sleepy sleepy or sleepy drug effect.
On about 3 occasions when visiting with (close) family during an afternoon I dozed off while we sat around the kitchen table having coffee.
I really really tried to stay awake and it was so hard and seemed so rude. splashed my face with cold water and headed home. But I was no longer tired.... and
indeed didn't sleep until about 3am the following morning.

So it has a half life of about 10 hours for me lol Who knows what the interactions of Methadone, Lyrica, and Mirapex can be though and with the various combinations of the doses. I think maybe the .25 more Mirapex is just about my limit for taking those 3 drugs together. I will try again tonight, maybe I will get used to it.

It sounds like a case of boredom to me. You would know if the conversation were boring though Today I had to attend a meeting and I had trouble keeping my eyes open. I mean I am all drugged up too but the addtition of being at a meeting I did not want to attend and hearing stuff I already was aware of, and also having to sit in one place...it was very difficult to stay awake. As soon as I got up I was okay and went back to my desk and worked away.

[Polar Bear]

My initial reaction was that of course it was not boredom, but you know what ?? The particular person does go on and on.... the same work story and issues from the last time we spoke.... with updates.

[majoraward]

My Zeo ZQ (overall score) was 45 last night. It showed that from 1:45 am until I got up at 4:25 am I was basically not sleeping at all. The night before was my best night at 67 because of the added Mirapex. The worst night my wife had was an 89, best was 122.

I think what probably is happening (hope I am wrong) is that the jolt of Mirapex let me sleep the night before but the higher amount in my system last night was pushing me towards augmenting. Zeo doesn't show any awakenings less than 2 minutes. I think my restless legs were really bad last night from the results showing I was up from 1:45 on basically (but I was not aware of it). So for the past 8 days I have been getting worse except that 2 days ago I jolted it with Mirapex. Really I was amazed when Mirapex worked to get me off the 6 weeks of torture awhile back. I guess it has worked for 3 months now or something like that - it probably is starting to turn against me.

I had to force myself to go to work today, I was soooo tired. It wasn't bad though after I got there, I mean the average person who is not used to having severe RLS probably would have stayed home but I'm used to it. I even sat through a one hour meeting. The restless legs weren't bothering me but I had to drink coffee just to keep going. I think I probably will know tomorrow if the Mirapex is turning against me (the little traitor). I won't think it is too funny and probably won't have much of a sense of humor by tomorrow morning if it is a bad night. I guess I am pre-whining but maybe not, it has been mostly a downward slope for 8 days, I just didn't know what was going on until last night. I take enough drugs to sink a battleship, its got to be augmentation.

I was just thinking that if I have a bad night I will know in the middle of the night and I'll take an Ambien, it might allow me to sleep some.