Playing doctor

[ViewsAskew]

OK, the first thing I have to say is, "This was conducted by an idiot who believes she can diagnose and treat herself. This should not be replicated by anyone with a brain." The second thing I have to say is that this is a novel, not a post.

Phew, disclosures out of the way.

I started methadone over two years ago. Anyone who was around about three-four years ago knows how much I whined and begged for info on how to resolve extreme augmentation. I went through lots of docs, lots of meds, and after two years of initially having problems, I finally had a solution.

But, methadone is only a partial solution for those of us with PLMD. And PLMD was my primary problem when I started. So, the methadone resolved the permanently augmented RLS, but it didn't do much for the PLMD.

Two years in, I'm exhausted. I awaken anywhere from 5-20 times a night. I can't get up if I haven't had at least 9 hours sleep and prefer 14 in order to feel functional. Just like before I started this nightmare of using drugs to control all of this.

I keep remembering the good things about Mirapex. I fell asleep at night - I never to that with methadone. I'm up until 3 or 4 AM every night. I could manage on 7-8 hours of sleep. Now? Not a chance. And, I slept through the night.

I am purposely forgetting the hideous problems I had with Mirapex - the bizarre mood changes, the constant mind agitation, the difficulties with temperature regulation and many more.

I am hoping that a tiny amount of Mirapex - 1/4 of a .25 mg tab, so .06125 - added to a slightly reduced dose of methadone - 15 mg to 12.5 - will solve my problems but not have many side effects because of the tiny dose.

And, after day 5, it seems to be doing relatively well. I am falling asleep earlier. As soon as I finish this, I'm off to bed. For me, that's early. I got up two days in a row with 7-8 hours sleep. It was hard to get up, but I awakened more quickly and was functional during the day while working. The side effects are there, but greatly diminished. The mind agitation is present, but blunted. No mood changes yet. And, no food issues yet.

I plan to take it for 3-4 weeks, then take 1-2 weeks off. I'm not sure how often I need to stop it to prevent problems, but if I've lived 2 years exhausted, a week or two every few weeks can't kill me. Hopefully this will allow me to stay on a very low dose and keep the methadone reduced, too.

So, fingers crossed. True to form, it's 12:50 here and my eyes are heavy. Mirapex has always been such a sleep aid for me and continues to be. Getting that little burst of dopamine is all I need to get tired. I'm toddling off to bed, setting my alarm for 8:30 Am - only 7 1/2 hours of sleep. For someone who's been needing 14 hours to feel human, this is truly a great thing.

It does make me wonder if this would be a much better therapy for many of us. Instead of a large dose of Mirapex or Requip, maybe a tiny amount along with an opioid or Tramadol would really be the best option.

If anyone else has tried a combo with less than .125 mg of Mirapex, I'd be interested to know how long it's worked for you and if you've ever needed a break from it.

[Sojourner]

Ann, Unfortunately I do not have a direct response to your question. However, I am posting with hopes that you are resting well this night and will continue to do so in the nights ahead. Perhpas your plan is a statement about the extremes sufferers with rls/plmd must embark upon with respect to treatment. I know you will be careful with your "doctoring." Are you able to consult with your doc(s) regarding your plan or to help monitor your progress? I know others with have more info. regards your question. Fingers are crossed.

[cornelia]

Ann, so sorry. In video 4 of Discovery Health I noticed dr Winkelmann saying that (I think he meant after augmentation on a DA) that a bit of an opioid and a tiny bit of a DA can work quite well as a matter of fact. So, there's hope.

Corrie

[FidgetBoy]

Good for you, Ann! I'm glad you are taking control of your sleep. While I would never advocate treating oneself for this condition.. I definitely think you know more about RLS then 99.9% of doctors. So- you get em', Tiger.

ps... I'm extremely jealous you've found that a very low dose of DA may work for you. I couldn't get relief with those damn drugs until I reached a larger dose. And voila~ Augmentation.

[SquirmingSusan]

Hmmm, my page must have reset to Greenwich Mean Time - Josh posted at 6pm today, but it's only 1:59 here.

Ann, I so want to try what you're trying. And it's only been 8 months since the horrible augmentation on Requip, with it's accompanying suicidal depression, horrible pain, and the start of all this ridiculous PLMW.

The RLS is under control, but the jerking can make me totally looney. The Wellbutrin helps quite a bit with that, but it seems like there must be a better way to treat the PLMW than with an antidepressant that comes with a high risk of seizures.

So lead on, my dear, and keep us posted. I may try that yet.

[Bjorn]

Ann, I'm anxiously awaiting progress reports. And I do hope you're experiencing lots of progress.

Bjorn

[Sojourner]

Ann, Continued wishes that things are going well.

Perhaps not the best place for this but I was wondering...would it be beneficial or worth considering adding a seperate forum topic specifically related to PLMD?

[ViewsAskew]

We can add more topic areas - if people will use them. If anyone is interested, let us know.

Well, interesting morning here. I got up, and had a terribly tight schedule. I am very busy - busier than I want - which is one of the reasons I want this to work. DH has time management issues. Until this morning, I thought I'd pretty much let all that go. I mean, we've been together for 7 years.

I won't bore you with the details, but he wanted to do something as I needed to walk out the door - I had a very busy schedule and it involved other people, rental vehicles that had to be picked up on time, etc. I'd told him the night before that 9 AM would work, but it couldn't be later. He approached me at 9:32.

I blew up. I mean, blew up. I acted like a two year old. He was so taken aback - we've never yelled at each other before, I don't think. In retrospect, I am pretty fed up with his attitude toward time - when it affects me at any rate. But, that did not merit my behavior. And, I am extra stressed - I am too busy, have too many business deliverables due, and I've not felt I'm up to it physically.

Again, sound good, but not enough of an excuse. But, Mirapex is. The last time I was on this, I has definite mood issues and anger that would just well up out of nowhere. I learned to sort of "contain" it and not act on it, but this one just took me by surprise.

As long as I continue this therapy, which is working fine in other ways for now, I will need to be vigilant about my moods and behavior. I have a big apology to make tonight when DH gets home. I know he's not happy because he hasn't even called me today. Usually he touches base with me when we are not together. Not a word today. He isn't the type to brood or hold it against me, more the type to want to discuss and see what we need to change to resolve. And, I'm not sure how to answer that.

[Sojourner]

Ann, Just a subjective opinion...I've read lots of your posts and for some reason your last post does seem..well more clinical and detached. Can't believe I said that but it's kinda what I feel. Maybe the stress coming through and why not consideraring all you have been and are going through. I think your DH will understand. If this is the first time something like this has happened he's probably just as unsure of what happened and how to deal with it as you are. I'm sure that when the dust settles previous experience with each other will take precedence, cooler minds will prevail, and besides s... happens. Wishing you continued success in medical school and sending sincere and warmest wishes to you both.

[ViewsAskew]

Update.

I've been doing this for over two weeks now. I tried going up to .125 mg one night, but it didn't help any more, so I went back down to .0625 of Mirapex. I am still using 12.5 mg of methadone instead of 15.

Overall, it is a success as of now. I am feeling MUCH more awake during the day. I still hate getting up, but I can do it. And, I am going to bed earlier most of the time (though, tonight I haven't yet taken it because I prefer staying up and don't have anywhere to be in the morning and want to be functional. . .).

Also, I was having breakthrough RLS at least 5-8 days out of the month, and sometimes more. I have not had any breakthrough since I started this.

I am still awakening several time per night. It seems unrelated to RLS or PLMD though. Sometimes my body hurts (I have a lot of pain when I sleep based on the sleep position I am in) and not sure what's up the rest of the time. It's probably five times a night. Without the Mirapex, it was more. I'd prefer zero

Per the things I don't like, I am having many of the side effects I had before, but all are very mild this time. Like the songs stuck in my head, the constant "brain" chatter (it just won't shut up - I can have two or three conversations going on at the same time - it's hyperactive), the desire to eat more, temp regulation issues, and a harder time falling asleep once I awaken.

Worst, thought, is the edginess/ease-with-which-I-anger. Today I was yelling at a taxi, then another driver, things I don't normally do. I stopped myself immediately, but I don't like this part. I will meditate more and try to stop myself and reframe the situation when this happens with the hope that I can sort of train myself to not let the limbic emotions control my behavior.

It's not a miracle. But it is better. I feel like I can get through this busy period now, and I wasn't at all sure I could a few weeks ago. With the methadone alone, I had 80% of my life back. Now I have 90%.

I'd like 100%, but will keep working on that

[Pairodocs]

Ann, I hope your DH can understand. I think it happens with Requip too, my DH says he's use to getting yelled at in the last year. Most of the time there is a reason (he's AADD and 60% hearing loss), but not all the time. I was hoping for some relaxation from that on the Mirapex, but I guess I'd better keep watch for it.

[ViewsAskew]

It's been a tough week for us. But, we're still here and all is. . .well, it is what it is.

We've talked and he gets it. I've made an intense effort to lighten up -to me, my brain has switched to flight or fight mode. At any given time, I'm ready to pounce . . . on whatever. That's really suppressed my sense of humour - I haven't been laughing at things, I realized. Way, way too serious. So, I'm trying to laugh more, create good chemicals in my brain, see if that helps chase away this limbic brain control.

[doety]

I know Methadone isn't the answer to all my problems. Right now, the worst part of it is that it suppresses my appetite into the morning. I'm diabetic and must have a balanced diet, to try to keep my blood sugar at an even rate. Now, I've never hungry until I get crazy. Food seems to taste worse too. Does it have that affect on you?
I'm trying to take it at 6 at night, hoping it'll wear off by morning.
What I'm doing now: 10 mg of Methadone, 5 mg of Klonopine and then a few puffs of dope. That makes me very sleepy (and happy). I can pretty much time it -- I'll be up at 2, then up at 4:30 - 5, and sometimes if I'm lucky I can still get a couple more hours. Sometimes I wake up because I'm having a hot flash -- at 64, this is ridiculous.
Mostly, I'm depressed and don't know where to turn. I desperately want to lose weight and can't seem to, no matter what I do (I'm barely eating). Every time I turn around I see another story about what diabetes is going to do to me and it makes me terrified. And having too much "belly fat" means I'll have a heart attack. Or whatever. My husband (hey! he's got ADD too. talk about ridiculous) has read a book about diabetes and now is telling me I must cut out carbs (while the nutritionist is telling me to add them), and that we mustn't eat certain things, but sure have some real cream, etc.. I made the mistake of taking him to the store tonight and I was ready to blow by the time we got to checkout.

[doety]

I forgot to add this: I'm not taking Mirapex or Requip (etc.) -- got off of that last December. But I'm having RLS during the daytime for some reason and it really is interfering with my work. I'm a mess.

[doety]

Hi Ann: Those last two posts were me, a few hours ago, totally out of control. My apologies. What I really meant to say was: I feel your pain. And I hope your nights get better and better.