Something Awesome Happened Last Night!

[EeFall]

Last night we had a bunch of relatives over. After they left we cleaned up the place and then my wife went to bed. I sat here beginning at 8:30 pm when I took my regular meds of Lyrica, Methadone, and Clonidine. I didn't take my Mirapex. I had stopped it about February 14th because I augmented on it, the night before though I did try it again and while I did sleep with it, it made me have cold sweats and dizzy the next day. I had to take kratom in the morning to allow me to feel normal. I also left out the fact that the prior week I had a ferritin (iron) infusion and last Thursday I had another iron infusion. First time I have had a full treatment of iron.

So anyway, I'm sitting here last night at 8:30 waiting for the RLS symtoms to kick in and to pace the floor all night as usual, or stand up in kitchen half the night trying to use the laptop. The reason being without Mirapex (the generic version) I don't sleep at night because my RLS is so bad. At 9:30 pm I realize that I am having no symptoms, at 11 pm I am like what the hell is going on, no symptoms. At midnight I am perplexed, but I have brilliant idea...why not just go to bed (roflmao) because it just had not occurred to me that I could do so until then.


I went to bed and got up at 6 am and made myself some coffee, the wife was still sleeping lol. She got up and we had breakfast and went on a walk. I'm sitting here thinking that I took my pills this morning when I got up out of habit, but now I am wondering if I needed to take the Lyrica and Methadone...I don't think I did need to take them! Incredibly as it seems my RLS seems to have disappeared. I would pinch myself but I know I am awake lol. I am thinking the two doses of iron may have done the trick. I'm going to try to not take my methadone at noon and see what happens.

To put this in perspective this has not happened to me in 13 years that I could go to bed like that last night without my mirapex or a substitute for it like Methadone or Oxycodone...something, but this time I didn't need it and this morning I didn't jump out of bed as usual from RLS, but just got up because I was rested! Weird.

[Polar Bear]

What a wonderful night you have had. I am so happy for you.

If you are considering trying to manage without any of your usual medications, please bear in mind the possibility of withdrawals. Nice and easy does it

I hope tonight is another good one.

[ViewsAskew]

Too many factors to be sure. That you stopped the Mirapex 2 weeks ago because of augmentation could be part of it - how much, don't know. After 2 weeks, it's absolutely possible that the extra symptoms that come with stopping a DA during augmentation have now decreased and you don't have those anymore. The transfusion likely also contributed. How much for each? No way to know.

But, certainly glad it did! That must have felt great. Let's hope it continues for a long time.

[badnights]

Bonus! I sure hope this is a sign of good things to come.

[EeFall]

I went to bed at 8 pm tonight, same time as wife (and she read) and was feeling pretty good about the way things were going but woke up at 10:30 pm with RLS Symptoms, not horrible symptoms, but enough to get me up. I put the dishwasher dishes away trying to think about what I should do. Sat down and thought about it, and finally at 11 pm went and took 1/2 methadone tab and a Clonidine tab. I don't know if they will help but so far I am able to sit and type.

Don't remember if I mentioned that I called for an appointment Friday because the left pinky and index finger of my left hand had gun to sleep a week before and never came back. Also I discovered while clipping my right fingernails that my left hand had very little strength to do that. Anyway they had me drive immediately to the clinic and I was checked out for a stroke and they ended up giving me a Titan wrist splint and want me to wear it for 10 days to see if it is carpal tunnel. Hasn't helped yet. As far as I am concerned it is just another inconvenience to an already screwed up lifestyle, a lifestyle of sit around and get fat and wait for the big one to send me out of this strange existence.

Had a very big hassle with my Lyrica over the last few days. Today I was so mad I even surprised myself. My wife tried to work it out but I guess we will see tomorrow. The short story is despite what the bottle says, like 3 refills remaining until June, 2014...it is not true. The wonderful people at the state government came up with a wonderful (I am being sarcastic) new law that dangerous medications like Lyrica can't be prescribed for more than 6 months...would be nice if they told all involved (like me) when they try to screw my already hanging by the thread life up even more.

My mind is moving about very quickly like a pissed off Tinkerbell flying around in a huff. I feel very trapped and defeated. Leaving working Friday also makes things even worse. I calculated that I have just enough vacation to make up the 5-1/2 hours I took off for the day because of the potential stroke. Another sad note is that I don't think it is that they were so concerned with my welfare as they are with a lawsuit if something were to really occur and they didn't do anything. I had no idea they would make such a big deal about my left hand, but now I know.

Anyway I am now, along with my other conditions and RLS, very sad. I don't want to continue taking all of these worthless medications, I don't want to work anymore, and I would just like to sit at home and veg but it doesn't seem like any of my wishes will come true, including being free of RLS. 13 years is a lot of years to be at war and I am just exhausted is all, I'm sure it will be worse before it gets better but whatever. I'm rambling...hopefully the meds will kick in and I'll fall asleep soon.

[EeFall]

I never did go back to sleep. At 3:30 am I went and took a shower and headed off for work. Worked all day and made it back home. I don't feel half bad considering but I know I am about 4 hours away now from another hell on earth night. If you think I am pessimistic, gloomy, bitter, and whatever else negative there is in the world, you would be right.

On the other hand I just spent the last 2 hours taking 12 photos of my niece that my wife requested from my brother last night and cropped them and printed them out in 3 different sizes on matte photo paper. That I can do and it is enjoyable. My wife is creating a calendar (a little late) of our grand kids and our niece. They think I'm a pretty cool uncle and grandpa because I tend to play with them like hide-and-go-seek and finger paints and all that good stuff - at least everything isn't a total loss, it just seems like it to me much of the time because I am so extremely tired.

[debbluebird]

I realize, my WED/PLMD isn't as bad as yours, but at times I feel as bad as you do. Lately I've had some good nights, but the bad nights still out weight the good ones. I never thought in a million years that "silly" restless legs, could ruin my life. I wish there was an answer for all of us. It's funny, when we do have a good night, we are jumping for joy and think maybe our nightmare is over. Sunday night I only got 2 1/2 hours of sleep. Last night, maybe four. All I know is that I'm tired all the time. I've got a new doctor and she is making me come monthly for now. I saw her today and I brought her some handouts. She seems receptive. So far she seems to understand that I don't want to take mirapex. Today, we increased my gabapentin. Actually it was my idea. She doesn't really have any solutions. The only other thing I have done, was I talked to my sleep doctor last week (who's in another state), and he wants me to restart iron. Last lab was 86, which is pretty good for me. The only good thing that has come from having WED/PLMD is getting to know everyone here.

[badnights]

when we do have a good night, we are jumping for joy and think maybe our nightmare is over.

I think that's the only thing that keeps us alive sometimes - the hope that's generated.

eefall I'm impressed at your self-therapy, talking yourself away from the bitterness and seeing the good things. It's so damn hard to see anything good when you're chronically exhausted.

There's something drastically wrong with a society that's rich and abundant, yet insists on productivity from someone who lacks such a critical ingredient for it. The closest modern equivalent would be a torture cell, where military prisoners are sleep-deprived and have their heads plunged into water and their fingernails pulled out. I'm mixing up my centuries. But torture, in the midst of "civilization", is what's really happening to you. What you're trying to do is torture, inflicted as much by this society as by the disease, which would not be as bad if you could run on your own clock.

[EeFall]

I was going to take a shower at 3:30 am again this morning, no sleep, but then I decided to try to go to bed again instead. I fell asleep until the alarm went off at 5:15 am and my wife told me to sleep in but alas, sleeping in was 20 minutes for me - I went to work but it was a very difficult day. Tomorrow I will no doubt do the same thing all over again but I'm not happy.

I hear all the other stuff going on in the world and it all makes me sick. Yesterday on the news they were talking about giving a new HIV baby 3 drugs that cured her totally (for the first time they have cured an HIV baby). The news said it was important because 300,000 babies a year are born in the world now with HIV. I cried inside thinking what an introverted a****** I am when things like that are going on all the time to Innocence like them.

Then I think again as now, but I'm not happy.

[rthom]

I feel that way alot too eefall. like I should be a better person because it could be much wose like that person etc..... I was mad as all he.. tonight because my dog once again has awoken me within minutes of me fallin asleep, intentionally--with no good reason, she wanted nothing just me to be awake. (she has taken to doing this alot and she insists i wake) So I was mad told my wife i was beginning to hate the dog (If you knew me you would know that is impossible) and that she should just let me be no matter what the reason--even if she thinks she is saving me--I felt aweful about it--Like my life is so bad--it's not but the lack of sleep sure makes it seem that way. At that point I just wanted to sleep no matter what--even if it were to actually kill me.

[EeFall]

I realize, my WED/PLMD isn't as bad as yours, but at times I feel as bad as you do. Lately I've had some good nights, but the bad nights still out weight the good ones. I never thought in a million years that "silly" restless legs, could ruin my life. I wish there was an answer for all of us. It's funny, when we do have a good night, we are jumping for joy and think maybe our nightmare is over. Sunday night I only got 2 1/2 hours of sleep. Last night, maybe four. All I know is that I'm tired all the time. I've got a new doctor and she is making me come monthly for now. I saw her today and I brought her some handouts. She seems receptive. So far she seems to understand that I don't want to take mirapex. Today, we increased my gabapentin. Actually it was my idea. She doesn't really have any solutions. The only other thing I have done, was I talked to my sleep doctor last week (who's in another state), and he wants me to restart iron. Last lab was 86, which is pretty good for me. The only good thing that has come from having WED/PLMD is getting to know everyone here.

I don't corner the market on feeling bad. I am sure you do feel as bad as me or worse, as many on here do. Severe RLS/WED is unbelievable literally, I mean I know most people don't have a clue what this does to us. Normal people may have stayed up for a night or two with no rest studying for a test or something like that but how can they relate to someone who has stayed up for weeks, months, years without much sleep? The older we get, at least in my experience, the worse it gets. I have heard people say that older people don't need as much sleep, which may be true, but it is 6 or 7 hours of sleep instead of 7 or 8 hours of sleep - not no sleep, and not pacing around like some mindless zombie because you can't even sit down for a moment breather.

Mirapex and all those other similar drugs, I thought they were really a godsend for several years but they have so many side effects that they almost aren't worth it. I say that as I just take a .25 mg Mirapex and I'm staring at another one sitting on the table by me. I've got to get some sleep, it is driving me crazy. I mean it is driving me crazy. This morning driving to work I very nearly got into an altercation, road rage. I'm losing it. Someone is going to end up taking me out, you can't pick fights with gang members half your age or you're going to get killed. I'm smarter than that or I used to be. The problem is I don't fear anything anymore, except RLS/WED. That I fear, and for good reason. It is scary stuff. "'Silly' restless legs, could ruin my life" maybe I would rather be taken out by a gang banger, at least it would be fairly short and sweet.

My iron after 3 months of having a drug infusion was 96, the doc thought that was really weird. I guess the iron, according to doc, should last in ones bloodstream for years. Not the case with me (and probably others with RLS), I wonder why. He thought sure it would be approaching 300, of course he is a blood doc so he doesn't know anything about RLS. I hope your new doc works out, sounds like she is trainable lol. Mine gave up, second to do so. I understand though, they need to help the ones they can and the ones they can't...will they can't. Here is to hoping for better days (and nights).

[debbluebird]

I think the reason that I've been so much more calmer now is that I don't have to go to work anymore. When I was working I remember how it was, knowing that I only had so many hours to get some sleep. I would get hysterical from exhaustion. Now I just sleep whenever I can. I just don't have your stress. I feel for you. I will be having another iron lab done in 3 months. It is interesting how our bodies motabolise iron.

[EeFall]

Mirapex actually worked last night the way it should, I slept from 11 pm to 5:15 am when alarm went off. Wow, how a few hours sleep can make me feel so much better, calmer, and happy. Hope it works tonight too. I figure it will take 3 nights of good sleep to get back to my normal.

[ViewsAskew]

Wonder if you can try what I did - alternate between opioids and Mirapex every few days or every day? It allowed me to use Mirapex for over 2 years without any augmentation. I'd still be doing it if the Mirapex didn't make me suicidal! It sure beats having to stop it for several weeks or months before you can use it again! I wonder if someone could take it 4-5 days a week, then opioids 2-3 days. That might be enough to keep it from augmenting.

[EeFall]

Wonder if you can try what I did - alternate between opioids and Mirapex every few days or every day? It allowed me to use Mirapex for over 2 years without any augmentation. I'd still be doing it if the Mirapex didn't make me suicidal! It sure beats having to stop it for several weeks or months before you can use it again! I wonder if someone could take it 4-5 days a week, then opioids 2-3 days. That might be enough to keep it from augmenting.

I think I may have to do as you say. The alternative drugs I have been trying don't seem to work. Sort of like drinking. If I get totally smashed from drinking I will sleep because I am about passed out lol, but in reality I can't drink at all because it gives me RLS/WED symptoms as do the alternative medications (darn).

So now on top of everything else I went and had surgery on my back yesterday to get rid of a cyst that had become infected. It was a harmless black head for 30 years (that doctors wouldn't treat) and suddenly last month became terribly inflamed. They gave me antibiotics for 10 days and then told me to have it taken out. Yesterday they did just that. If I would have known what was involved I wouldn't have had it done. I ended up with 7 stitches on the outside and many layers of stitches within. They shot the heck out of me with local Anesthetic before beginning yet when they had cleaned out a wide area and were stitching me up down deep it became immediately apparent from my screams that they had not deaden it down deep enough. Now I know what it is like to be stitched together without meds and I can tell you it isn't pleasant lol.

Last night at about 8 pm the added anesthetic that they gave me after the great scream wore off and I was running around the house cussing and my wife had thought I had lost my mind (lol). Eventually I was able to sleep by around 11 pm thanks to .5 mg of Mirapex again! Today I am very sore but it is healing nicely. It is just that having RLS/WED is enough and having something on top of that is just not good. I am hoping the Mirapex (generic) works again to night because I really would like to sleep.

Tomorrow I will have to sit down and see if I can't come up with a Methadone then Mirapex plan. Problem is that I don't think Methadone will work for me alone as it does for you. At the moment the only thing that seems to work (when it is not working against me) is Mirapex (pramipexole). Cheers.

ps Mirapex doesn't have to make me suicidal, I think about that like about once every hour of the day for the past 13 years, sad but true.